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PKD RESEARCH DURING THE COVID-19 PANDEMICFIND A CLINIC
The PKD Foundation is committed to helping patients find medical care for their PKD. This tool has been created to help you assess the best clinics close to where you live or work. Enter your zip code above and we’ll help you compare and identify a PKD clinic or PKD-familiarnephrologist.
RESEARCH NEWS
Research news. A special issue on Cell Signaling in PKD, led by Drs. Albert C.M. Ong and Vicente E. Torres, and consisting of 30 papers from many respected members of the PKD research community. Cellular signaling in PKD foreword: dedicated to the memory of Dr. Jared James Grantham (1936–2016); without his vision, achievements and impact on NUTRITION | PKD FOUNDATIONSHOULD I STOP EATING PROTEIN?THE MAJOR SOURCE OF THESE WASTE PRODUCTS IS THE FOOD YOU EAT, ESPECIALLY PROTEIN. THEREFORE, WHEN YOU HAVE LOST A SIGNIFICANT AMOUNT OF KIDNEY FUNC...SHOULD I STOP EATING SALT?HIGH BLOOD PRESSURE IN PKD DOES NOT SEEM TO BE CAUSED BY SALT INTAKE. REGARDLESS, EXCESSIVE AMOUNTS OF SALT SHOULD BE AVOIDED AND LOWERING DIETARY...SHOULD I TAKE EXTRA VITAMINS TO MAKE SURE I’M GETTING ALL THE NUTRIENTS I NEED?IF YOU ARE MAINTAINING A BALANCED AND HEALTHY DIET, YOU TYPICALLY WILL NOT NEED EXTRA VITAMINS. UNLIKE FOOD, VITAMINS ARE NEEDED ONLY IN TINY AMOUN...HOW MUCH FLUID SHOULD I DRINK EACH DAY?A CHEMICAL CALLED CYCLIC AMP (CAMP) HAS BEEN SHOWN TO PROMOTE GROWTH OF POLYCYSTIC KIDNEYS. IN YOUR KIDNEY, CAMP IS PRODUCED IN RESPONSE TO A HORMO...WILL CAFFEINE DAMAGE MY KIDNEYS?THERE IS NO DIRECT EVIDENCE THAT CAFFEINE WILL DAMAGE YOUR POLYCYSTIC KIDNEYS. HOWEVER, STUDIES OF PKD CELLS GROWN IN A LAB HAVE SHOWN THAT CAFFEIN...WHAT ABOUT CALCIUM AND MAGNESIUM?IN NON-PKD SETTINGS, A DEFICIENCY OF CALCIUM AND MAGNESIUM HAS BEEN ASSOCIATED WITH HIGH BLOOD PRESSURE. DIETARY CALCIUM AND MAGNESIUM ARE BEST PRO...ESSENTIALS FOR A BALANCED AND HEALTHY DIETGIVEN THE CURRENT OBESITY EPIDEMIC THAT IS PREVALENT IN ALL DEVELOPED COUNTRIES, THE FOLLOWING PROVIDES A SIMPLE CONCEPTUAL FRAMEWORK FOR A BALANCE... Nutrition - With PKD Connect, no one will ever face polycystic kidney disease alone. Because patients, family and loved ones will always beconnected to others
ADPKD REGISTRY ANNUAL REPORT 2020 The ADPKD Registry was launched in September 2019. It is the first nationwide, patient-reported database for ADPKD, and so far over 1,900 people have signed up! By completing our modules, participants are providing valuable insights on ADPKD, diet and lifestyle, quality of life, living with liver cysts, family history, and pain.RESEARCH PIPELINE
Research pipeline. Since 1982, we’ve led the fight against PKD through the support of basic, translational, and clinical scientists; vital research funding; and patient education. Today, we’re encouraged by the significant strides we’re making to find treatments. We’ve gone from a single drug in clinical trials fiveyears ago to an
CHRONIC PAIN MANAGEMENT Chronic pain management. Chronic pain is one of the most common problems for patients with PKD. The pain is usually in the back or the side and occasionally in the stomach. It can be intermittent and mild requiring only occasional pain medicine such as acetaminophen (Tylenol). However, in a small number of patients with severe PKD, thepain can
YALE SCHOOL OF MEDICINE The clinical services provided by our nephrologists and associated clinical teams cover all aspects of kidney disease, both in the inpatient and outpatient settings. The faculty members of the Yale Section of Nephrology provide broad expertise in the diagnosis and management of acute and chronic kidney diseases. We work together as a committed clinical practice POLYCYSTIC KIDNEY DISEASE The PKD Foundation is the only organization in the U.S. solely dedicated to finding treatments and a cure for polycystic kidney disease (PKD) and to improving the lives of those it affects. Since 1982, we have proudly funded more than $50 million in PKD research and leveraged $1.5 billion in government funding, while serving our local PKD CONNECT CONFERENCE 2021 PKDCON is virtual in 2021. Registration is now open for our virtual PKDCON event! Free to attend for the first time, this year’s PKD Connect Conference will bring together patients, caregivers, health care providers, and researchers from the safety of their homes. This virtual event features the latest in research and treatment optionswhile
PKD RESEARCH DURING THE COVID-19 PANDEMICFIND A CLINIC
The PKD Foundation is committed to helping patients find medical care for their PKD. This tool has been created to help you assess the best clinics close to where you live or work. Enter your zip code above and we’ll help you compare and identify a PKD clinic or PKD-familiarnephrologist.
RESEARCH NEWS
Research news. A special issue on Cell Signaling in PKD, led by Drs. Albert C.M. Ong and Vicente E. Torres, and consisting of 30 papers from many respected members of the PKD research community. Cellular signaling in PKD foreword: dedicated to the memory of Dr. Jared James Grantham (1936–2016); without his vision, achievements and impact on NUTRITION | PKD FOUNDATIONSHOULD I STOP EATING PROTEIN?THE MAJOR SOURCE OF THESE WASTE PRODUCTS IS THE FOOD YOU EAT, ESPECIALLY PROTEIN. THEREFORE, WHEN YOU HAVE LOST A SIGNIFICANT AMOUNT OF KIDNEY FUNC...SHOULD I STOP EATING SALT?HIGH BLOOD PRESSURE IN PKD DOES NOT SEEM TO BE CAUSED BY SALT INTAKE. REGARDLESS, EXCESSIVE AMOUNTS OF SALT SHOULD BE AVOIDED AND LOWERING DIETARY...SHOULD I TAKE EXTRA VITAMINS TO MAKE SURE I’M GETTING ALL THE NUTRIENTS I NEED?IF YOU ARE MAINTAINING A BALANCED AND HEALTHY DIET, YOU TYPICALLY WILL NOT NEED EXTRA VITAMINS. UNLIKE FOOD, VITAMINS ARE NEEDED ONLY IN TINY AMOUN...HOW MUCH FLUID SHOULD I DRINK EACH DAY?A CHEMICAL CALLED CYCLIC AMP (CAMP) HAS BEEN SHOWN TO PROMOTE GROWTH OF POLYCYSTIC KIDNEYS. IN YOUR KIDNEY, CAMP IS PRODUCED IN RESPONSE TO A HORMO...WILL CAFFEINE DAMAGE MY KIDNEYS?THERE IS NO DIRECT EVIDENCE THAT CAFFEINE WILL DAMAGE YOUR POLYCYSTIC KIDNEYS. HOWEVER, STUDIES OF PKD CELLS GROWN IN A LAB HAVE SHOWN THAT CAFFEIN...WHAT ABOUT CALCIUM AND MAGNESIUM?IN NON-PKD SETTINGS, A DEFICIENCY OF CALCIUM AND MAGNESIUM HAS BEEN ASSOCIATED WITH HIGH BLOOD PRESSURE. DIETARY CALCIUM AND MAGNESIUM ARE BEST PRO...ESSENTIALS FOR A BALANCED AND HEALTHY DIETGIVEN THE CURRENT OBESITY EPIDEMIC THAT IS PREVALENT IN ALL DEVELOPED COUNTRIES, THE FOLLOWING PROVIDES A SIMPLE CONCEPTUAL FRAMEWORK FOR A BALANCE... Nutrition - With PKD Connect, no one will ever face polycystic kidney disease alone. Because patients, family and loved ones will always beconnected to others
ADPKD REGISTRY ANNUAL REPORT 2020 The ADPKD Registry was launched in September 2019. It is the first nationwide, patient-reported database for ADPKD, and so far over 1,900 people have signed up! By completing our modules, participants are providing valuable insights on ADPKD, diet and lifestyle, quality of life, living with liver cysts, family history, and pain.RESEARCH PIPELINE
Research pipeline. Since 1982, we’ve led the fight against PKD through the support of basic, translational, and clinical scientists; vital research funding; and patient education. Today, we’re encouraged by the significant strides we’re making to find treatments. We’ve gone from a single drug in clinical trials fiveyears ago to an
CHRONIC PAIN MANAGEMENT Chronic pain management. Chronic pain is one of the most common problems for patients with PKD. The pain is usually in the back or the side and occasionally in the stomach. It can be intermittent and mild requiring only occasional pain medicine such as acetaminophen (Tylenol). However, in a small number of patients with severe PKD, thepain can
YALE SCHOOL OF MEDICINE The clinical services provided by our nephrologists and associated clinical teams cover all aspects of kidney disease, both in the inpatient and outpatient settings. The faculty members of the Yale Section of Nephrology provide broad expertise in the diagnosis and management of acute and chronic kidney diseases. We work together as a committed clinical practiceCORONAVIRUS
Coronavirus Disease 2019 (COVID-19) is thought to spread mainly from person-to-person (within about 6 feet) through small drops of liquid made when an infected person coughs or sneezes (known as respiratory droplets). Having chronic kidney disease of any stage increases risk for severe illness from COVID-19. EDUCATION | PKD FOUNDATION Education - With PKD Connect, no one will ever face polycystic kidney disease alone. Because patients, family and loved ones will always beconnected to others
PKD AND THE COVID-19 VACCINE Published December 17, 2020 | While distribution of the Pfizer COVID-19 vaccine across the country has begun, many in the PKD community have questions about the COVID-19 vaccine. Chris Rusconi, Ph.D., chief research officer at the PKD Foundation, sits down with Patrick Dean, M.D., surgical director of the Kidney/Pancreas Transplant Program and a consultant and associate professor ofWHAT IS ADPKD?
ADPKD is a painful disease that impacts quality of life. The average size of a typical kidney is a human fist. Polycystic kidneys can get much larger, some growing as large as a football, and weighing up to 30 pounds each. Unlike some genetic diseases, ADPKD does not skip a generation meaning it often affects many people in one family.PKD LIFE MAGAZINE
PKD Life, a free magazine distributed quarterly by the PKD Foundation to our community, focuses on the topics that matter most to our members.Each issue includes stories written with physicians, health care providers, patients, and caregivers. KIDNEY CYST SCLEROTHERAPY Kidney Cyst Sclerotherapy - With PKD Connect, no one will ever face polycystic kidney disease alone. Because patients, family and loved ones will always be connected to others who understand firsthand what you’re going through. TOLVAPTAN | PKD FOUNDATION Tolvaptan is a medication (taken twice a day as an oral pill) that affects how the kidneys control the concentration of urine. It has been shown to slow down the growth of kidney cysts (total kidney volume) when it is taken for a long time (several years) by adults atPKD CONNECT
With PKD Connect, no one will ever face polycystic kidney disease alone. Because patients, family and loved ones will always be connected to others who understand firsthand what you’re goingthrough.
VENGLUSTAT TREATMENT FOR ADPKD (STAGED-PKD) Overview STAGED-PKD is a clinical study evaluating the effectiveness and safety of GZ/SAR402671 (or Venglustat – an oral investigational drug) in patients with Autosomal Dominant PKD. The study will be will be run in 2 parts and aims to enroll 640 people across approximately 80 international sites located in the Americas, Europe andAsia-Pacific. The
FREEDOM-1: CLINICAL STUDY FOR LIVING DONOR KIDNEY Overview The FREEDOM-1 Study is a clinical research study of an investigational cell therapy, called FCR001. The purpose of this study is to learn more about whether FCR001 can prevent the rejection of living donor kidney transplants without the need for lifelong anti-rejection drugs. FREEDOM-1 is a Phase 3 clinical trial. It willcompare the
POLYCYSTIC KIDNEY DISEASE The PKD Foundation is the only organization in the U.S. solely dedicated to finding treatments and a cure for polycystic kidney disease (PKD) and to improving the lives of those it affects. Since 1982, we have proudly funded more than $50 million in PKD research and leveraged $1.5 billion in government funding, while serving our local PKD CONNECT CONFERENCE 2021 PKDCON is virtual in 2021. Registration is now open for our virtual PKDCON event! Free to attend for the first time, this year’s PKD Connect Conference will bring together patients, caregivers, health care providers, and researchers from the safety of their homes. This virtual event features the latest in research and treatment optionswhile
PKD RESEARCH DURING THE COVID-19 PANDEMICFIND A CLINIC
The PKD Foundation is committed to helping patients find medical care for their PKD. This tool has been created to help you assess the best clinics close to where you live or work. Enter your zip code above and we’ll help you compare and identify a PKD clinic or PKD-familiarnephrologist.
RESEARCH NEWS
Research news. A special issue on Cell Signaling in PKD, led by Drs. Albert C.M. Ong and Vicente E. Torres, and consisting of 30 papers from many respected members of the PKD research community. Cellular signaling in PKD foreword: dedicated to the memory of Dr. Jared James Grantham (1936–2016); without his vision, achievements and impact on NUTRITION | PKD FOUNDATIONSHOULD I STOP EATING PROTEIN?THE MAJOR SOURCE OF THESE WASTE PRODUCTS IS THE FOOD YOU EAT, ESPECIALLY PROTEIN. THEREFORE, WHEN YOU HAVE LOST A SIGNIFICANT AMOUNT OF KIDNEY FUNC...SHOULD I STOP EATING SALT?HIGH BLOOD PRESSURE IN PKD DOES NOT SEEM TO BE CAUSED BY SALT INTAKE. REGARDLESS, EXCESSIVE AMOUNTS OF SALT SHOULD BE AVOIDED AND LOWERING DIETARY...SHOULD I TAKE EXTRA VITAMINS TO MAKE SURE I’M GETTING ALL THE NUTRIENTS I NEED?IF YOU ARE MAINTAINING A BALANCED AND HEALTHY DIET, YOU TYPICALLY WILL NOT NEED EXTRA VITAMINS. UNLIKE FOOD, VITAMINS ARE NEEDED ONLY IN TINY AMOUN...HOW MUCH FLUID SHOULD I DRINK EACH DAY?A CHEMICAL CALLED CYCLIC AMP (CAMP) HAS BEEN SHOWN TO PROMOTE GROWTH OF POLYCYSTIC KIDNEYS. IN YOUR KIDNEY, CAMP IS PRODUCED IN RESPONSE TO A HORMO...WILL CAFFEINE DAMAGE MY KIDNEYS?THERE IS NO DIRECT EVIDENCE THAT CAFFEINE WILL DAMAGE YOUR POLYCYSTIC KIDNEYS. HOWEVER, STUDIES OF PKD CELLS GROWN IN A LAB HAVE SHOWN THAT CAFFEIN...WHAT ABOUT CALCIUM AND MAGNESIUM?IN NON-PKD SETTINGS, A DEFICIENCY OF CALCIUM AND MAGNESIUM HAS BEEN ASSOCIATED WITH HIGH BLOOD PRESSURE. DIETARY CALCIUM AND MAGNESIUM ARE BEST PRO...ESSENTIALS FOR A BALANCED AND HEALTHY DIETGIVEN THE CURRENT OBESITY EPIDEMIC THAT IS PREVALENT IN ALL DEVELOPED COUNTRIES, THE FOLLOWING PROVIDES A SIMPLE CONCEPTUAL FRAMEWORK FOR A BALANCE... Nutrition - With PKD Connect, no one will ever face polycystic kidney disease alone. Because patients, family and loved ones will always beconnected to others
ADPKD REGISTRY ANNUAL REPORT 2020 The ADPKD Registry was launched in September 2019. It is the first nationwide, patient-reported database for ADPKD, and so far over 1,900 people have signed up! By completing our modules, participants are providing valuable insights on ADPKD, diet and lifestyle, quality of life, living with liver cysts, family history, and pain.RESEARCH PIPELINE
Research pipeline. Since 1982, we’ve led the fight against PKD through the support of basic, translational, and clinical scientists; vital research funding; and patient education. Today, we’re encouraged by the significant strides we’re making to find treatments. We’ve gone from a single drug in clinical trials fiveyears ago to an
CHRONIC PAIN MANAGEMENT Chronic pain management. Chronic pain is one of the most common problems for patients with PKD. The pain is usually in the back or the side and occasionally in the stomach. It can be intermittent and mild requiring only occasional pain medicine such as acetaminophen (Tylenol). However, in a small number of patients with severe PKD, thepain can
YALE SCHOOL OF MEDICINE The clinical services provided by our nephrologists and associated clinical teams cover all aspects of kidney disease, both in the inpatient and outpatient settings. The faculty members of the Yale Section of Nephrology provide broad expertise in the diagnosis and management of acute and chronic kidney diseases. We work together as a committed clinical practice POLYCYSTIC KIDNEY DISEASE The PKD Foundation is the only organization in the U.S. solely dedicated to finding treatments and a cure for polycystic kidney disease (PKD) and to improving the lives of those it affects. Since 1982, we have proudly funded more than $50 million in PKD research and leveraged $1.5 billion in government funding, while serving our local PKD CONNECT CONFERENCE 2021 PKDCON is virtual in 2021. Registration is now open for our virtual PKDCON event! Free to attend for the first time, this year’s PKD Connect Conference will bring together patients, caregivers, health care providers, and researchers from the safety of their homes. This virtual event features the latest in research and treatment optionswhile
PKD RESEARCH DURING THE COVID-19 PANDEMICFIND A CLINIC
The PKD Foundation is committed to helping patients find medical care for their PKD. This tool has been created to help you assess the best clinics close to where you live or work. Enter your zip code above and we’ll help you compare and identify a PKD clinic or PKD-familiarnephrologist.
RESEARCH NEWS
Research news. A special issue on Cell Signaling in PKD, led by Drs. Albert C.M. Ong and Vicente E. Torres, and consisting of 30 papers from many respected members of the PKD research community. Cellular signaling in PKD foreword: dedicated to the memory of Dr. Jared James Grantham (1936–2016); without his vision, achievements and impact on NUTRITION | PKD FOUNDATIONSHOULD I STOP EATING PROTEIN?THE MAJOR SOURCE OF THESE WASTE PRODUCTS IS THE FOOD YOU EAT, ESPECIALLY PROTEIN. THEREFORE, WHEN YOU HAVE LOST A SIGNIFICANT AMOUNT OF KIDNEY FUNC...SHOULD I STOP EATING SALT?HIGH BLOOD PRESSURE IN PKD DOES NOT SEEM TO BE CAUSED BY SALT INTAKE. REGARDLESS, EXCESSIVE AMOUNTS OF SALT SHOULD BE AVOIDED AND LOWERING DIETARY...SHOULD I TAKE EXTRA VITAMINS TO MAKE SURE I’M GETTING ALL THE NUTRIENTS I NEED?IF YOU ARE MAINTAINING A BALANCED AND HEALTHY DIET, YOU TYPICALLY WILL NOT NEED EXTRA VITAMINS. UNLIKE FOOD, VITAMINS ARE NEEDED ONLY IN TINY AMOUN...HOW MUCH FLUID SHOULD I DRINK EACH DAY?A CHEMICAL CALLED CYCLIC AMP (CAMP) HAS BEEN SHOWN TO PROMOTE GROWTH OF POLYCYSTIC KIDNEYS. IN YOUR KIDNEY, CAMP IS PRODUCED IN RESPONSE TO A HORMO...WILL CAFFEINE DAMAGE MY KIDNEYS?THERE IS NO DIRECT EVIDENCE THAT CAFFEINE WILL DAMAGE YOUR POLYCYSTIC KIDNEYS. HOWEVER, STUDIES OF PKD CELLS GROWN IN A LAB HAVE SHOWN THAT CAFFEIN...WHAT ABOUT CALCIUM AND MAGNESIUM?IN NON-PKD SETTINGS, A DEFICIENCY OF CALCIUM AND MAGNESIUM HAS BEEN ASSOCIATED WITH HIGH BLOOD PRESSURE. DIETARY CALCIUM AND MAGNESIUM ARE BEST PRO...ESSENTIALS FOR A BALANCED AND HEALTHY DIETGIVEN THE CURRENT OBESITY EPIDEMIC THAT IS PREVALENT IN ALL DEVELOPED COUNTRIES, THE FOLLOWING PROVIDES A SIMPLE CONCEPTUAL FRAMEWORK FOR A BALANCE... Nutrition - With PKD Connect, no one will ever face polycystic kidney disease alone. Because patients, family and loved ones will always beconnected to others
ADPKD REGISTRY ANNUAL REPORT 2020 The ADPKD Registry was launched in September 2019. It is the first nationwide, patient-reported database for ADPKD, and so far over 1,900 people have signed up! By completing our modules, participants are providing valuable insights on ADPKD, diet and lifestyle, quality of life, living with liver cysts, family history, and pain.RESEARCH PIPELINE
Research pipeline. Since 1982, we’ve led the fight against PKD through the support of basic, translational, and clinical scientists; vital research funding; and patient education. Today, we’re encouraged by the significant strides we’re making to find treatments. We’ve gone from a single drug in clinical trials fiveyears ago to an
CHRONIC PAIN MANAGEMENT Chronic pain management. Chronic pain is one of the most common problems for patients with PKD. The pain is usually in the back or the side and occasionally in the stomach. It can be intermittent and mild requiring only occasional pain medicine such as acetaminophen (Tylenol). However, in a small number of patients with severe PKD, thepain can
YALE SCHOOL OF MEDICINE The clinical services provided by our nephrologists and associated clinical teams cover all aspects of kidney disease, both in the inpatient and outpatient settings. The faculty members of the Yale Section of Nephrology provide broad expertise in the diagnosis and management of acute and chronic kidney diseases. We work together as a committed clinical practiceCORONAVIRUS
Coronavirus Disease 2019 (COVID-19) is thought to spread mainly from person-to-person (within about 6 feet) through small drops of liquid made when an infected person coughs or sneezes (known as respiratory droplets). Having chronic kidney disease of any stage increases risk for severe illness from COVID-19. EDUCATION | PKD FOUNDATION Education - With PKD Connect, no one will ever face polycystic kidney disease alone. Because patients, family and loved ones will always beconnected to others
PKD AND THE COVID-19 VACCINE Published December 17, 2020 | While distribution of the Pfizer COVID-19 vaccine across the country has begun, many in the PKD community have questions about the COVID-19 vaccine. Chris Rusconi, Ph.D., chief research officer at the PKD Foundation, sits down with Patrick Dean, M.D., surgical director of the Kidney/Pancreas Transplant Program and a consultant and associate professor ofWHAT IS ADPKD?
ADPKD is a painful disease that impacts quality of life. The average size of a typical kidney is a human fist. Polycystic kidneys can get much larger, some growing as large as a football, and weighing up to 30 pounds each. Unlike some genetic diseases, ADPKD does not skip a generation meaning it often affects many people in one family.PKD LIFE MAGAZINE
PKD Life, a free magazine distributed quarterly by the PKD Foundation to our community, focuses on the topics that matter most to our members.Each issue includes stories written with physicians, health care providers, patients, and caregivers. KIDNEY CYST SCLEROTHERAPY Kidney Cyst Sclerotherapy - With PKD Connect, no one will ever face polycystic kidney disease alone. Because patients, family and loved ones will always be connected to others who understand firsthand what you’re going through. TOLVAPTAN | PKD FOUNDATION Tolvaptan is a medication (taken twice a day as an oral pill) that affects how the kidneys control the concentration of urine. It has been shown to slow down the growth of kidney cysts (total kidney volume) when it is taken for a long time (several years) by adults atPKD CONNECT
With PKD Connect, no one will ever face polycystic kidney disease alone. Because patients, family and loved ones will always be connected to others who understand firsthand what you’re goingthrough.
VENGLUSTAT TREATMENT FOR ADPKD (STAGED-PKD) Overview STAGED-PKD is a clinical study evaluating the effectiveness and safety of GZ/SAR402671 (or Venglustat – an oral investigational drug) in patients with Autosomal Dominant PKD. The study will be will be run in 2 parts and aims to enroll 640 people across approximately 80 international sites located in the Americas, Europe andAsia-Pacific. The
FREEDOM-1: CLINICAL STUDY FOR LIVING DONOR KIDNEY Overview The FREEDOM-1 Study is a clinical research study of an investigational cell therapy, called FCR001. The purpose of this study is to learn more about whether FCR001 can prevent the rejection of living donor kidney transplants without the need for lifelong anti-rejection drugs. FREEDOM-1 is a Phase 3 clinical trial. It willcompare the
POLYCYSTIC KIDNEY DISEASE The PKD Foundation is the only organization in the U.S. solely dedicated to finding treatments and a cure for polycystic kidney disease (PKD) and to improving the lives of those it affects. Since 1982, we have proudly funded more than $50 million in PKD research and leveraged $1.5 billion in government funding, while serving our local PKD CONNECT CONFERENCE 2021 PKDCON is virtual in 2021. Registration is now open for our virtual PKDCON event! Free to attend for the first time, this year’s PKD Connect Conference will bring together patients, caregivers, health care providers, and researchers from the safety of their homes. This virtual event features the latest in research and treatment optionswhile
PKD RESEARCH DURING THE COVID-19 PANDEMICFIND A CLINIC
The PKD Foundation is committed to helping patients find medical care for their PKD. This tool has been created to help you assess the best clinics close to where you live or work. Enter your zip code above and we’ll help you compare and identify a PKD clinic or PKD-familiarnephrologist.
RESEARCH NEWS
Research news. A special issue on Cell Signaling in PKD, led by Drs. Albert C.M. Ong and Vicente E. Torres, and consisting of 30 papers from many respected members of the PKD research community. Cellular signaling in PKD foreword: dedicated to the memory of Dr. Jared James Grantham (1936–2016); without his vision, achievements and impact on NUTRITION | PKD FOUNDATIONSHOULD I STOP EATING PROTEIN?THE MAJOR SOURCE OF THESE WASTE PRODUCTS IS THE FOOD YOU EAT, ESPECIALLY PROTEIN. THEREFORE, WHEN YOU HAVE LOST A SIGNIFICANT AMOUNT OF KIDNEY FUNC...SHOULD I STOP EATING SALT?HIGH BLOOD PRESSURE IN PKD DOES NOT SEEM TO BE CAUSED BY SALT INTAKE. REGARDLESS, EXCESSIVE AMOUNTS OF SALT SHOULD BE AVOIDED AND LOWERING DIETARY...SHOULD I TAKE EXTRA VITAMINS TO MAKE SURE I’M GETTING ALL THE NUTRIENTS I NEED?IF YOU ARE MAINTAINING A BALANCED AND HEALTHY DIET, YOU TYPICALLY WILL NOT NEED EXTRA VITAMINS. UNLIKE FOOD, VITAMINS ARE NEEDED ONLY IN TINY AMOUN...HOW MUCH FLUID SHOULD I DRINK EACH DAY?A CHEMICAL CALLED CYCLIC AMP (CAMP) HAS BEEN SHOWN TO PROMOTE GROWTH OF POLYCYSTIC KIDNEYS. IN YOUR KIDNEY, CAMP IS PRODUCED IN RESPONSE TO A HORMO...WILL CAFFEINE DAMAGE MY KIDNEYS?THERE IS NO DIRECT EVIDENCE THAT CAFFEINE WILL DAMAGE YOUR POLYCYSTIC KIDNEYS. HOWEVER, STUDIES OF PKD CELLS GROWN IN A LAB HAVE SHOWN THAT CAFFEIN...WHAT ABOUT CALCIUM AND MAGNESIUM?IN NON-PKD SETTINGS, A DEFICIENCY OF CALCIUM AND MAGNESIUM HAS BEEN ASSOCIATED WITH HIGH BLOOD PRESSURE. DIETARY CALCIUM AND MAGNESIUM ARE BEST PRO...ESSENTIALS FOR A BALANCED AND HEALTHY DIETGIVEN THE CURRENT OBESITY EPIDEMIC THAT IS PREVALENT IN ALL DEVELOPED COUNTRIES, THE FOLLOWING PROVIDES A SIMPLE CONCEPTUAL FRAMEWORK FOR A BALANCE... Nutrition - With PKD Connect, no one will ever face polycystic kidney disease alone. Because patients, family and loved ones will always beconnected to others
ADPKD REGISTRY ANNUAL REPORT 2020 The ADPKD Registry was launched in September 2019. It is the first nationwide, patient-reported database for ADPKD, and so far over 1,900 people have signed up! By completing our modules, participants are providing valuable insights on ADPKD, diet and lifestyle, quality of life, living with liver cysts, family history, and pain.RESEARCH PIPELINE
Research pipeline. Since 1982, we’ve led the fight against PKD through the support of basic, translational, and clinical scientists; vital research funding; and patient education. Today, we’re encouraged by the significant strides we’re making to find treatments. We’ve gone from a single drug in clinical trials fiveyears ago to an
CHRONIC PAIN MANAGEMENT Chronic pain management. Chronic pain is one of the most common problems for patients with PKD. The pain is usually in the back or the side and occasionally in the stomach. It can be intermittent and mild requiring only occasional pain medicine such as acetaminophen (Tylenol). However, in a small number of patients with severe PKD, thepain can
YALE SCHOOL OF MEDICINE The clinical services provided by our nephrologists and associated clinical teams cover all aspects of kidney disease, both in the inpatient and outpatient settings. The faculty members of the Yale Section of Nephrology provide broad expertise in the diagnosis and management of acute and chronic kidney diseases. We work together as a committed clinical practice POLYCYSTIC KIDNEY DISEASE The PKD Foundation is the only organization in the U.S. solely dedicated to finding treatments and a cure for polycystic kidney disease (PKD) and to improving the lives of those it affects. Since 1982, we have proudly funded more than $50 million in PKD research and leveraged $1.5 billion in government funding, while serving our local PKD CONNECT CONFERENCE 2021 PKDCON is virtual in 2021. Registration is now open for our virtual PKDCON event! Free to attend for the first time, this year’s PKD Connect Conference will bring together patients, caregivers, health care providers, and researchers from the safety of their homes. This virtual event features the latest in research and treatment optionswhile
PKD RESEARCH DURING THE COVID-19 PANDEMICFIND A CLINIC
The PKD Foundation is committed to helping patients find medical care for their PKD. This tool has been created to help you assess the best clinics close to where you live or work. Enter your zip code above and we’ll help you compare and identify a PKD clinic or PKD-familiarnephrologist.
RESEARCH NEWS
Research news. A special issue on Cell Signaling in PKD, led by Drs. Albert C.M. Ong and Vicente E. Torres, and consisting of 30 papers from many respected members of the PKD research community. Cellular signaling in PKD foreword: dedicated to the memory of Dr. Jared James Grantham (1936–2016); without his vision, achievements and impact on NUTRITION | PKD FOUNDATIONSHOULD I STOP EATING PROTEIN?THE MAJOR SOURCE OF THESE WASTE PRODUCTS IS THE FOOD YOU EAT, ESPECIALLY PROTEIN. THEREFORE, WHEN YOU HAVE LOST A SIGNIFICANT AMOUNT OF KIDNEY FUNC...SHOULD I STOP EATING SALT?HIGH BLOOD PRESSURE IN PKD DOES NOT SEEM TO BE CAUSED BY SALT INTAKE. REGARDLESS, EXCESSIVE AMOUNTS OF SALT SHOULD BE AVOIDED AND LOWERING DIETARY...SHOULD I TAKE EXTRA VITAMINS TO MAKE SURE I’M GETTING ALL THE NUTRIENTS I NEED?IF YOU ARE MAINTAINING A BALANCED AND HEALTHY DIET, YOU TYPICALLY WILL NOT NEED EXTRA VITAMINS. UNLIKE FOOD, VITAMINS ARE NEEDED ONLY IN TINY AMOUN...HOW MUCH FLUID SHOULD I DRINK EACH DAY?A CHEMICAL CALLED CYCLIC AMP (CAMP) HAS BEEN SHOWN TO PROMOTE GROWTH OF POLYCYSTIC KIDNEYS. IN YOUR KIDNEY, CAMP IS PRODUCED IN RESPONSE TO A HORMO...WILL CAFFEINE DAMAGE MY KIDNEYS?THERE IS NO DIRECT EVIDENCE THAT CAFFEINE WILL DAMAGE YOUR POLYCYSTIC KIDNEYS. HOWEVER, STUDIES OF PKD CELLS GROWN IN A LAB HAVE SHOWN THAT CAFFEIN...WHAT ABOUT CALCIUM AND MAGNESIUM?IN NON-PKD SETTINGS, A DEFICIENCY OF CALCIUM AND MAGNESIUM HAS BEEN ASSOCIATED WITH HIGH BLOOD PRESSURE. DIETARY CALCIUM AND MAGNESIUM ARE BEST PRO...ESSENTIALS FOR A BALANCED AND HEALTHY DIETGIVEN THE CURRENT OBESITY EPIDEMIC THAT IS PREVALENT IN ALL DEVELOPED COUNTRIES, THE FOLLOWING PROVIDES A SIMPLE CONCEPTUAL FRAMEWORK FOR A BALANCE... Nutrition - With PKD Connect, no one will ever face polycystic kidney disease alone. Because patients, family and loved ones will always beconnected to others
ADPKD REGISTRY ANNUAL REPORT 2020 The ADPKD Registry was launched in September 2019. It is the first nationwide, patient-reported database for ADPKD, and so far over 1,900 people have signed up! By completing our modules, participants are providing valuable insights on ADPKD, diet and lifestyle, quality of life, living with liver cysts, family history, and pain.RESEARCH PIPELINE
Research pipeline. Since 1982, we’ve led the fight against PKD through the support of basic, translational, and clinical scientists; vital research funding; and patient education. Today, we’re encouraged by the significant strides we’re making to find treatments. We’ve gone from a single drug in clinical trials fiveyears ago to an
CHRONIC PAIN MANAGEMENT Chronic pain management. Chronic pain is one of the most common problems for patients with PKD. The pain is usually in the back or the side and occasionally in the stomach. It can be intermittent and mild requiring only occasional pain medicine such as acetaminophen (Tylenol). However, in a small number of patients with severe PKD, thepain can
YALE SCHOOL OF MEDICINE The clinical services provided by our nephrologists and associated clinical teams cover all aspects of kidney disease, both in the inpatient and outpatient settings. The faculty members of the Yale Section of Nephrology provide broad expertise in the diagnosis and management of acute and chronic kidney diseases. We work together as a committed clinical practiceCORONAVIRUS
Coronavirus Disease 2019 (COVID-19) is thought to spread mainly from person-to-person (within about 6 feet) through small drops of liquid made when an infected person coughs or sneezes (known as respiratory droplets). Having chronic kidney disease of any stage increases risk for severe illness from COVID-19. EDUCATION | PKD FOUNDATION Education - With PKD Connect, no one will ever face polycystic kidney disease alone. Because patients, family and loved ones will always beconnected to others
PKD AND THE COVID-19 VACCINE Published December 17, 2020 | While distribution of the Pfizer COVID-19 vaccine across the country has begun, many in the PKD community have questions about the COVID-19 vaccine. Chris Rusconi, Ph.D., chief research officer at the PKD Foundation, sits down with Patrick Dean, M.D., surgical director of the Kidney/Pancreas Transplant Program and a consultant and associate professor ofWHAT IS ADPKD?
ADPKD is a painful disease that impacts quality of life. The average size of a typical kidney is a human fist. Polycystic kidneys can get much larger, some growing as large as a football, and weighing up to 30 pounds each. Unlike some genetic diseases, ADPKD does not skip a generation meaning it often affects many people in one family.PKD LIFE MAGAZINE
PKD Life, a free magazine distributed quarterly by the PKD Foundation to our community, focuses on the topics that matter most to our members.Each issue includes stories written with physicians, health care providers, patients, and caregivers. KIDNEY CYST SCLEROTHERAPY Kidney Cyst Sclerotherapy - With PKD Connect, no one will ever face polycystic kidney disease alone. Because patients, family and loved ones will always be connected to others who understand firsthand what you’re going through. TOLVAPTAN | PKD FOUNDATION Tolvaptan is a medication (taken twice a day as an oral pill) that affects how the kidneys control the concentration of urine. It has been shown to slow down the growth of kidney cysts (total kidney volume) when it is taken for a long time (several years) by adults atPKD CONNECT
With PKD Connect, no one will ever face polycystic kidney disease alone. Because patients, family and loved ones will always be connected to others who understand firsthand what you’re goingthrough.
VENGLUSTAT TREATMENT FOR ADPKD (STAGED-PKD) Overview STAGED-PKD is a clinical study evaluating the effectiveness and safety of GZ/SAR402671 (or Venglustat – an oral investigational drug) in patients with Autosomal Dominant PKD. The study will be will be run in 2 parts and aims to enroll 640 people across approximately 80 international sites located in the Americas, Europe andAsia-Pacific. The
FREEDOM-1: CLINICAL STUDY FOR LIVING DONOR KIDNEY Overview The FREEDOM-1 Study is a clinical research study of an investigational cell therapy, called FCR001. The purpose of this study is to learn more about whether FCR001 can prevent the rejection of living donor kidney transplants without the need for lifelong anti-rejection drugs. FREEDOM-1 is a Phase 3 clinical trial. It willcompare the
CORONAVIRUS
Coronavirus Disease 2019 (COVID-19) is thought to spread mainly from person-to-person (within about 6 feet) through small drops of liquid made when an infected person coughs or sneezes (known as respiratory droplets). Having chronic kidney disease of any stage increases risk for severe illness from COVID-19. PKD CONNECT CONFERENCE 2021 PKDCON is virtual in 2021. Registration is now open for our virtual PKDCON event! Free to attend for the first time, this year’s PKD Connect Conference will bring together patients, caregivers, health care providers, and researchers from the safety of their homes. This virtual event features the latest in research and treatment optionswhile
FIND A CLINIC
The PKD Foundation is committed to helping patients find medical care for their PKD. This tool has been created to help you assess the best clinics close to where you live or work. Enter your zip code above and we’ll help you compare and identify a PKD clinic or PKD-familiarnephrologist.
RESEARCH NEWS
Research news. A special issue on Cell Signaling in PKD, led by Drs. Albert C.M. Ong and Vicente E. Torres, and consisting of 30 papers from many respected members of the PKD research community. Cellular signaling in PKD foreword: dedicated to the memory of Dr. Jared James Grantham (1936–2016); without his vision, achievements and impact on WHAT ARE THE STAGES OF ADPKD? What are the stages of ADPKD? - With PKD Connect, no one will ever face polycystic kidney disease alone. Because patients, family and loved ones will always be connected to others who understand firsthand what you’re going through. ADPKD REGISTRY ANNUAL REPORT 2020 The ADPKD Registry was launched in September 2019. It is the first nationwide, patient-reported database for ADPKD, and so far over 1,900 people have signed up! By completing our modules, participants are providing valuable insights on ADPKD, diet and lifestyle, quality of life, living with liver cysts, family history, and pain. PKD AND THE COVID-19 VACCINE Published December 17, 2020 | While distribution of the Pfizer COVID-19 vaccine across the country has begun, many in the PKD community have questions about the COVID-19 vaccine. Chris Rusconi, Ph.D., chief research officer at the PKD Foundation, sits down with Patrick Dean, M.D., surgical director of the Kidney/Pancreas Transplant Program and a consultant and associate professor ofPKD LIFE MAGAZINE
PKD Life, a free magazine distributed quarterly by the PKD Foundation to our community, focuses on the topics that matter most to our members.Each issue includes stories written with physicians, health care providers, patients, and caregivers. YALE SCHOOL OF MEDICINE The clinical services provided by our nephrologists and associated clinical teams cover all aspects of kidney disease, both in the inpatient and outpatient settings. The faculty members of the Yale Section of Nephrology provide broad expertise in the diagnosis and management of acute and chronic kidney diseases. We work together as a committed clinical practice FREEDOM-1: CLINICAL STUDY FOR LIVING DONOR KIDNEY Overview The FREEDOM-1 Study is a clinical research study of an investigational cell therapy, called FCR001. The purpose of this study is to learn more about whether FCR001 can prevent the rejection of living donor kidney transplants without the need for lifelong anti-rejection drugs. FREEDOM-1 is a Phase 3 clinical trial. It willcompare the
CORONAVIRUS
Coronavirus Disease 2019 (COVID-19) is thought to spread mainly from person-to-person (within about 6 feet) through small drops of liquid made when an infected person coughs or sneezes (known as respiratory droplets). Having chronic kidney disease of any stage increases risk for severe illness from COVID-19. PKD CONNECT CONFERENCE 2021 PKDCON is virtual in 2021. Registration is now open for our virtual PKDCON event! Free to attend for the first time, this year’s PKD Connect Conference will bring together patients, caregivers, health care providers, and researchers from the safety of their homes. This virtual event features the latest in research and treatment optionswhile
FIND A CLINIC
The PKD Foundation is committed to helping patients find medical care for their PKD. This tool has been created to help you assess the best clinics close to where you live or work. Enter your zip code above and we’ll help you compare and identify a PKD clinic or PKD-familiarnephrologist.
RESEARCH NEWS
Research news. A special issue on Cell Signaling in PKD, led by Drs. Albert C.M. Ong and Vicente E. Torres, and consisting of 30 papers from many respected members of the PKD research community. Cellular signaling in PKD foreword: dedicated to the memory of Dr. Jared James Grantham (1936–2016); without his vision, achievements and impact on WHAT ARE THE STAGES OF ADPKD? What are the stages of ADPKD? - With PKD Connect, no one will ever face polycystic kidney disease alone. Because patients, family and loved ones will always be connected to others who understand firsthand what you’re going through. ADPKD REGISTRY ANNUAL REPORT 2020 The ADPKD Registry was launched in September 2019. It is the first nationwide, patient-reported database for ADPKD, and so far over 1,900 people have signed up! By completing our modules, participants are providing valuable insights on ADPKD, diet and lifestyle, quality of life, living with liver cysts, family history, and pain. PKD AND THE COVID-19 VACCINE Published December 17, 2020 | While distribution of the Pfizer COVID-19 vaccine across the country has begun, many in the PKD community have questions about the COVID-19 vaccine. Chris Rusconi, Ph.D., chief research officer at the PKD Foundation, sits down with Patrick Dean, M.D., surgical director of the Kidney/Pancreas Transplant Program and a consultant and associate professor ofPKD LIFE MAGAZINE
PKD Life, a free magazine distributed quarterly by the PKD Foundation to our community, focuses on the topics that matter most to our members.Each issue includes stories written with physicians, health care providers, patients, and caregivers. YALE SCHOOL OF MEDICINE The clinical services provided by our nephrologists and associated clinical teams cover all aspects of kidney disease, both in the inpatient and outpatient settings. The faculty members of the Yale Section of Nephrology provide broad expertise in the diagnosis and management of acute and chronic kidney diseases. We work together as a committed clinical practice FREEDOM-1: CLINICAL STUDY FOR LIVING DONOR KIDNEY Overview The FREEDOM-1 Study is a clinical research study of an investigational cell therapy, called FCR001. The purpose of this study is to learn more about whether FCR001 can prevent the rejection of living donor kidney transplants without the need for lifelong anti-rejection drugs. FREEDOM-1 is a Phase 3 clinical trial. It willcompare the
EDUCATION | PKD FOUNDATION Education - With PKD Connect, no one will ever face polycystic kidney disease alone. Because patients, family and loved ones will always beconnected to others
ADPKD REGISTRY ANNUAL REPORT 2020 The ADPKD Registry was launched in September 2019. It is the first nationwide, patient-reported database for ADPKD, and so far over 1,900 people have signed up! By completing our modules, participants are providing valuable insights on ADPKD, diet and lifestyle, quality of life, living with liver cysts, family history, and pain. WHAT ARE THE STAGES OF ADPKD? What are the stages of ADPKD? - With PKD Connect, no one will ever face polycystic kidney disease alone. Because patients, family and loved ones will always be connected to others who understand firsthand what you’re going through. PKD AND THE COVID-19 VACCINE Published December 17, 2020 | While distribution of the Pfizer COVID-19 vaccine across the country has begun, many in the PKD community have questions about the COVID-19 vaccine. Chris Rusconi, Ph.D., chief research officer at the PKD Foundation, sits down with Patrick Dean, M.D., surgical director of the Kidney/Pancreas Transplant Program and a consultant and associate professor of KIDNEY CYST SCLEROTHERAPY Kidney Cyst Sclerotherapy - With PKD Connect, no one will ever face polycystic kidney disease alone. Because patients, family and loved ones will always be connected to others who understand firsthand what you’re going through. CHRONIC PAIN MANAGEMENT Chronic pain management. Chronic pain is one of the most common problems for patients with PKD. The pain is usually in the back or the side and occasionally in the stomach. It can be intermittent and mild requiring only occasional pain medicine such as acetaminophen (Tylenol). However, in a small number of patients with severe PKD, thepain can
"WIND BENEATH MY WINGS" "Wind Beneath My Wings" - With PKD Connect, no one will ever face polycystic kidney disease alone. Because patients, family and loved ones will always be connected to others who understand firsthand what you’re going through. TREATING POLYCYSTIC KIDNEY DISEASE: COULD DIET BE THE KEY Important: Any changes to your current diet, including adding supplements to your diet, should be discussed with your health care team. Dr. Thomas Weimbs, University of California Santa Barbara (UCSB), and his research team have discovered that diets that induce ketosis in mouse, rat and cat models slowed or reversed the growth ofpolycystic kidneys.
MEET THE PKD FOUNDATION’S NEW DIRECTOR OF RESEARCH Meet the PKD Foundation’s new Director of Research - With PKD Connect, no one will ever face polycystic kidney disease alone. Because patients, family and loved ones will always be connected to others who understand firsthand what you’re going through.KANSAS CITY
Email volunteers@pkdcure.org for more information and to get involved. Now, as always, the PKD Foundation is committed to our mission of giving hope, advocating for patients, and building a community for all impacted by PKD. We'll continue supporting our community by providing important resources and timely updates on social media.CORONAVIRUS
Coronavirus Disease 2019 (COVID-19) is thought to spread mainly from person-to-person (within about 6 feet) through small drops of liquid made when an infected person coughs or sneezes (known as respiratory droplets). Having chronic kidney disease of any stage increases risk for severe illness from COVID-19. PKD CONNECT CONFERENCE 2021 PKDCON is virtual in 2021. Registration is now open for our virtual PKDCON event! Free to attend for the first time, this year’s PKD Connect Conference will bring together patients, caregivers, health care providers, and researchers from the safety of their homes. This virtual event features the latest in research and treatment optionswhile
FIND A CLINIC
The PKD Foundation is committed to helping patients find medical care for their PKD. This tool has been created to help you assess the best clinics close to where you live or work. Enter your zip code above and we’ll help you compare and identify a PKD clinic or PKD-familiarnephrologist.
RESEARCH NEWS
Research news. A special issue on Cell Signaling in PKD, led by Drs. Albert C.M. Ong and Vicente E. Torres, and consisting of 30 papers from many respected members of the PKD research community. Cellular signaling in PKD foreword: dedicated to the memory of Dr. Jared James Grantham (1936–2016); without his vision, achievements and impact on WHAT ARE THE STAGES OF ADPKD? What are the stages of ADPKD? - With PKD Connect, no one will ever face polycystic kidney disease alone. Because patients, family and loved ones will always be connected to others who understand firsthand what you’re going through. ADPKD REGISTRY ANNUAL REPORT 2020 The ADPKD Registry was launched in September 2019. It is the first nationwide, patient-reported database for ADPKD, and so far over 1,900 people have signed up! By completing our modules, participants are providing valuable insights on ADPKD, diet and lifestyle, quality of life, living with liver cysts, family history, and pain. PKD AND THE COVID-19 VACCINE Published December 17, 2020 | While distribution of the Pfizer COVID-19 vaccine across the country has begun, many in the PKD community have questions about the COVID-19 vaccine. Chris Rusconi, Ph.D., chief research officer at the PKD Foundation, sits down with Patrick Dean, M.D., surgical director of the Kidney/Pancreas Transplant Program and a consultant and associate professor ofPKD LIFE MAGAZINE
PKD Life, a free magazine distributed quarterly by the PKD Foundation to our community, focuses on the topics that matter most to our members.Each issue includes stories written with physicians, health care providers, patients, and caregivers. YALE SCHOOL OF MEDICINE The clinical services provided by our nephrologists and associated clinical teams cover all aspects of kidney disease, both in the inpatient and outpatient settings. The faculty members of the Yale Section of Nephrology provide broad expertise in the diagnosis and management of acute and chronic kidney diseases. We work together as a committed clinical practice FREEDOM-1: CLINICAL STUDY FOR LIVING DONOR KIDNEY Overview The FREEDOM-1 Study is a clinical research study of an investigational cell therapy, called FCR001. The purpose of this study is to learn more about whether FCR001 can prevent the rejection of living donor kidney transplants without the need for lifelong anti-rejection drugs. FREEDOM-1 is a Phase 3 clinical trial. It willcompare the
CORONAVIRUS
Coronavirus Disease 2019 (COVID-19) is thought to spread mainly from person-to-person (within about 6 feet) through small drops of liquid made when an infected person coughs or sneezes (known as respiratory droplets). Having chronic kidney disease of any stage increases risk for severe illness from COVID-19. PKD CONNECT CONFERENCE 2021 PKDCON is virtual in 2021. Registration is now open for our virtual PKDCON event! Free to attend for the first time, this year’s PKD Connect Conference will bring together patients, caregivers, health care providers, and researchers from the safety of their homes. This virtual event features the latest in research and treatment optionswhile
FIND A CLINIC
The PKD Foundation is committed to helping patients find medical care for their PKD. This tool has been created to help you assess the best clinics close to where you live or work. Enter your zip code above and we’ll help you compare and identify a PKD clinic or PKD-familiarnephrologist.
RESEARCH NEWS
Research news. A special issue on Cell Signaling in PKD, led by Drs. Albert C.M. Ong and Vicente E. Torres, and consisting of 30 papers from many respected members of the PKD research community. Cellular signaling in PKD foreword: dedicated to the memory of Dr. Jared James Grantham (1936–2016); without his vision, achievements and impact on WHAT ARE THE STAGES OF ADPKD? What are the stages of ADPKD? - With PKD Connect, no one will ever face polycystic kidney disease alone. Because patients, family and loved ones will always be connected to others who understand firsthand what you’re going through. ADPKD REGISTRY ANNUAL REPORT 2020 The ADPKD Registry was launched in September 2019. It is the first nationwide, patient-reported database for ADPKD, and so far over 1,900 people have signed up! By completing our modules, participants are providing valuable insights on ADPKD, diet and lifestyle, quality of life, living with liver cysts, family history, and pain. PKD AND THE COVID-19 VACCINE Published December 17, 2020 | While distribution of the Pfizer COVID-19 vaccine across the country has begun, many in the PKD community have questions about the COVID-19 vaccine. Chris Rusconi, Ph.D., chief research officer at the PKD Foundation, sits down with Patrick Dean, M.D., surgical director of the Kidney/Pancreas Transplant Program and a consultant and associate professor ofPKD LIFE MAGAZINE
PKD Life, a free magazine distributed quarterly by the PKD Foundation to our community, focuses on the topics that matter most to our members.Each issue includes stories written with physicians, health care providers, patients, and caregivers. YALE SCHOOL OF MEDICINE The clinical services provided by our nephrologists and associated clinical teams cover all aspects of kidney disease, both in the inpatient and outpatient settings. The faculty members of the Yale Section of Nephrology provide broad expertise in the diagnosis and management of acute and chronic kidney diseases. We work together as a committed clinical practice FREEDOM-1: CLINICAL STUDY FOR LIVING DONOR KIDNEY Overview The FREEDOM-1 Study is a clinical research study of an investigational cell therapy, called FCR001. The purpose of this study is to learn more about whether FCR001 can prevent the rejection of living donor kidney transplants without the need for lifelong anti-rejection drugs. FREEDOM-1 is a Phase 3 clinical trial. It willcompare the
EDUCATION | PKD FOUNDATION Education - With PKD Connect, no one will ever face polycystic kidney disease alone. Because patients, family and loved ones will always beconnected to others
ADPKD REGISTRY ANNUAL REPORT 2020 The ADPKD Registry was launched in September 2019. It is the first nationwide, patient-reported database for ADPKD, and so far over 1,900 people have signed up! By completing our modules, participants are providing valuable insights on ADPKD, diet and lifestyle, quality of life, living with liver cysts, family history, and pain. WHAT ARE THE STAGES OF ADPKD? What are the stages of ADPKD? - With PKD Connect, no one will ever face polycystic kidney disease alone. Because patients, family and loved ones will always be connected to others who understand firsthand what you’re going through. PKD AND THE COVID-19 VACCINE Published December 17, 2020 | While distribution of the Pfizer COVID-19 vaccine across the country has begun, many in the PKD community have questions about the COVID-19 vaccine. Chris Rusconi, Ph.D., chief research officer at the PKD Foundation, sits down with Patrick Dean, M.D., surgical director of the Kidney/Pancreas Transplant Program and a consultant and associate professor of KIDNEY CYST SCLEROTHERAPY Kidney Cyst Sclerotherapy - With PKD Connect, no one will ever face polycystic kidney disease alone. Because patients, family and loved ones will always be connected to others who understand firsthand what you’re going through. CHRONIC PAIN MANAGEMENT Chronic pain management. Chronic pain is one of the most common problems for patients with PKD. The pain is usually in the back or the side and occasionally in the stomach. It can be intermittent and mild requiring only occasional pain medicine such as acetaminophen (Tylenol). However, in a small number of patients with severe PKD, thepain can
"WIND BENEATH MY WINGS" "Wind Beneath My Wings" - With PKD Connect, no one will ever face polycystic kidney disease alone. Because patients, family and loved ones will always be connected to others who understand firsthand what you’re going through. TREATING POLYCYSTIC KIDNEY DISEASE: COULD DIET BE THE KEY Important: Any changes to your current diet, including adding supplements to your diet, should be discussed with your health care team. Dr. Thomas Weimbs, University of California Santa Barbara (UCSB), and his research team have discovered that diets that induce ketosis in mouse, rat and cat models slowed or reversed the growth ofpolycystic kidneys.
MEET THE PKD FOUNDATION’S NEW DIRECTOR OF RESEARCH Meet the PKD Foundation’s new Director of Research - With PKD Connect, no one will ever face polycystic kidney disease alone. Because patients, family and loved ones will always be connected to others who understand firsthand what you’re going through.KANSAS CITY
Email volunteers@pkdcure.org for more information and to get involved. Now, as always, the PKD Foundation is committed to our mission of giving hope, advocating for patients, and building a community for all impacted by PKD. We'll continue supporting our community by providing important resources and timely updates on social media. POLYCYSTIC KIDNEY DISEASE The PKD Foundation is the only organization in the U.S. solely dedicated to finding treatments and a cure for polycystic kidney disease (PKD) and to improving the lives of those it affects. Since 1982, we have proudly funded more than $50 million in PKD research and leveraged $1.5 billion in government funding, while serving our localCORONAVIRUS
Coronavirus Disease 2019 (COVID-19) is thought to spread mainly from person-to-person (within about 6 feet) through small drops of liquid made when an infected person coughs or sneezes (known as respiratory droplets). Having chronic kidney disease of any stage increases risk for severe illness from COVID-19. PKD CONNECT CONFERENCE 2021 PKDCON is virtual in 2021. Registration is now open for our virtual PKDCON event! Free to attend for the first time, this year’s PKD Connect Conference will bring together patients, caregivers, health care providers, and researchers from the safety of their homes. This virtual event features the latest in research and treatment optionswhile
EDUCATION | PKD FOUNDATION Education - With PKD Connect, no one will ever face polycystic kidney disease alone. Because patients, family and loved ones will always beconnected to others
FIND A CLINIC
The PKD Foundation is committed to helping patients find medical care for their PKD. This tool has been created to help you assess the best clinics close to where you live or work. Enter your zip code above and we’ll help you compare and identify a PKD clinic or PKD-familiarnephrologist.
RESEARCH NEWS
Research news. A special issue on Cell Signaling in PKD, led by Drs. Albert C.M. Ong and Vicente E. Torres, and consisting of 30 papers from many respected members of the PKD research community. Cellular signaling in PKD foreword: dedicated to the memory of Dr. Jared James Grantham (1936–2016); without his vision, achievements and impact onWHAT IS ADPKD?
ADPKD is a painful disease that impacts quality of life. The average size of a typical kidney is a human fist. Polycystic kidneys can get much larger, some growing as large as a football, and weighing up to 30 pounds each. Unlike some genetic diseases, ADPKD does not skip a generation meaning it often affects many people in one family. YALE SCHOOL OF MEDICINE The clinical services provided by our nephrologists and associated clinical teams cover all aspects of kidney disease, both in the inpatient and outpatient settings. The faculty members of the Yale Section of Nephrology provide broad expertise in the diagnosis and management of acute and chronic kidney diseases. We work together as a committed clinical practice CHRONIC PAIN MANAGEMENT Chronic pain management. Chronic pain is one of the most common problems for patients with PKD. The pain is usually in the back or the side and occasionally in the stomach. It can be intermittent and mild requiring only occasional pain medicine such as acetaminophen (Tylenol). However, in a small number of patients with severe PKD, thepain can
FREEDOM-1: CLINICAL STUDY FOR LIVING DONOR KIDNEY Overview The FREEDOM-1 Study is a clinical research study of an investigational cell therapy, called FCR001. The purpose of this study is to learn more about whether FCR001 can prevent the rejection of living donor kidney transplants without the need for lifelong anti-rejection drugs. FREEDOM-1 is a Phase 3 clinical trial. It willcompare the
POLYCYSTIC KIDNEY DISEASE The PKD Foundation is the only organization in the U.S. solely dedicated to finding treatments and a cure for polycystic kidney disease (PKD) and to improving the lives of those it affects. Since 1982, we have proudly funded more than $50 million in PKD research and leveraged $1.5 billion in government funding, while serving our localCORONAVIRUS
Coronavirus Disease 2019 (COVID-19) is thought to spread mainly from person-to-person (within about 6 feet) through small drops of liquid made when an infected person coughs or sneezes (known as respiratory droplets). Having chronic kidney disease of any stage increases risk for severe illness from COVID-19. PKD CONNECT CONFERENCE 2021 PKDCON is virtual in 2021. Registration is now open for our virtual PKDCON event! Free to attend for the first time, this year’s PKD Connect Conference will bring together patients, caregivers, health care providers, and researchers from the safety of their homes. This virtual event features the latest in research and treatment optionswhile
EDUCATION | PKD FOUNDATION Education - With PKD Connect, no one will ever face polycystic kidney disease alone. Because patients, family and loved ones will always beconnected to others
FIND A CLINIC
The PKD Foundation is committed to helping patients find medical care for their PKD. This tool has been created to help you assess the best clinics close to where you live or work. Enter your zip code above and we’ll help you compare and identify a PKD clinic or PKD-familiarnephrologist.
RESEARCH NEWS
Research news. A special issue on Cell Signaling in PKD, led by Drs. Albert C.M. Ong and Vicente E. Torres, and consisting of 30 papers from many respected members of the PKD research community. Cellular signaling in PKD foreword: dedicated to the memory of Dr. Jared James Grantham (1936–2016); without his vision, achievements and impact onWHAT IS ADPKD?
ADPKD is a painful disease that impacts quality of life. The average size of a typical kidney is a human fist. Polycystic kidneys can get much larger, some growing as large as a football, and weighing up to 30 pounds each. Unlike some genetic diseases, ADPKD does not skip a generation meaning it often affects many people in one family. YALE SCHOOL OF MEDICINE The clinical services provided by our nephrologists and associated clinical teams cover all aspects of kidney disease, both in the inpatient and outpatient settings. The faculty members of the Yale Section of Nephrology provide broad expertise in the diagnosis and management of acute and chronic kidney diseases. We work together as a committed clinical practice CHRONIC PAIN MANAGEMENT Chronic pain management. Chronic pain is one of the most common problems for patients with PKD. The pain is usually in the back or the side and occasionally in the stomach. It can be intermittent and mild requiring only occasional pain medicine such as acetaminophen (Tylenol). However, in a small number of patients with severe PKD, thepain can
FREEDOM-1: CLINICAL STUDY FOR LIVING DONOR KIDNEY Overview The FREEDOM-1 Study is a clinical research study of an investigational cell therapy, called FCR001. The purpose of this study is to learn more about whether FCR001 can prevent the rejection of living donor kidney transplants without the need for lifelong anti-rejection drugs. FREEDOM-1 is a Phase 3 clinical trial. It willcompare the
POLYCYSTIC KIDNEY DISEASE The PKD Foundation is the only organization in the U.S. solely dedicated to finding treatments and a cure for polycystic kidney disease (PKD) and to improving the lives of those it affects. Since 1982, we have proudly funded more than $50 million in PKD research and leveraged $1.5 billion in government funding, while serving our localWHAT IS ADPKD?
ADPKD is a painful disease that impacts quality of life. The average size of a typical kidney is a human fist. Polycystic kidneys can get much larger, some growing as large as a football, and weighing up to 30 pounds each. Unlike some genetic diseases, ADPKD does not skip a generation meaning it often affects many people in one family. DIET AND PKD: WHAT YOU SHOULD EAT FOR YOUR STAGE Fruits, vegetables, nuts, whole grains, and vegetable oils are the basis of the Mediterranean diet. However, fish is the main source of protein, while poultry and dairy products are advised in moderation. It’s recommended you: Drink a lot of water. People with PKD should drink a minimum of 3 liters of water per day to reduce the risk ofWHAT IS ARPKD?
Autosomal recessive polycystic kidney disease (ARPKD) is a rare genetic disorder occurring in approximately 1 in 25,000 children.It affects boys and girls equally and can cause death in the first month of life. If a child with ARPKD survives the newborn period, the chances of survival are good. WHAT ARE THE STAGES OF ADPKD? What are the stages of ADPKD? - With PKD Connect, no one will ever face polycystic kidney disease alone. Because patients, family and loved ones will always be connected to others who understand firsthand what you’re going through. TOLVAPTAN | PKD FOUNDATION Tolvaptan is a medication (taken twice a day as an oral pill) that affects how the kidneys control the concentration of urine. It has been shown to slow down the growth of kidney cysts (total kidney volume) when it is taken for a long time (several years) by adults at CHRONIC PAIN MANAGEMENT Chronic pain management. Chronic pain is one of the most common problems for patients with PKD. The pain is usually in the back or the side and occasionally in the stomach. It can be intermittent and mild requiring only occasional pain medicine such as acetaminophen (Tylenol). However, in a small number of patients with severe PKD, thepain can
KIDNEY CYST SCLEROTHERAPY Kidney Cyst Sclerotherapy - With PKD Connect, no one will ever face polycystic kidney disease alone. Because patients, family and loved ones will always be connected to others who understand firsthand what you’re going through.KANSAS CITY
Nicole Harr Chapter Coordinator. I joined the PKD Foundation as a Volunteer Chapter Coordinator 12 years ago! I was looking for a way to raise money for research and I found the most amazing people in Kansas City and across the country that are looking for the same thing – a day without worry that PKD will impact our children and futuregenerations.
ATLANTA | PKD FOUNDATION Email volunteers@pkdcure.org for more information and to get involved. Now, as always, the PKD Foundation is committed to our mission of giving hope, advocating for patients, and building a community for all impacted by PKD. We'll continue supporting our community by providing important resources and timely updates on social media. POLYCYSTIC KIDNEY DISEASE The PKD Foundation is the only organization in the U.S. solely dedicated to finding treatments and a cure for polycystic kidney disease (PKD) and to improving the lives of those it affects. Since 1982, we have proudly funded more than $50 million in PKD research and leveraged $1.5 billion in government funding, while serving our localCORONAVIRUS
Coronavirus Disease 2019 (COVID-19) is thought to spread mainly from person-to-person (within about 6 feet) through small drops of liquid made when an infected person coughs or sneezes (known as respiratory droplets). Having chronic kidney disease of any stage increases risk for severe illness from COVID-19. PKD CONNECT CONFERENCE 2021 PKDCON is virtual in 2021. Registration is now open for our virtual PKDCON event! Free to attend for the first time, this year’s PKD Connect Conference will bring together patients, caregivers, health care providers, and researchers from the safety of their homes. This virtual event features the latest in research and treatment optionswhile
EDUCATION | PKD FOUNDATION Education - With PKD Connect, no one will ever face polycystic kidney disease alone. Because patients, family and loved ones will always beconnected to others
FIND A CLINIC
The PKD Foundation is committed to helping patients find medical care for their PKD. This tool has been created to help you assess the best clinics close to where you live or work. Enter your zip code above and we’ll help you compare and identify a PKD clinic or PKD-familiarnephrologist.
RESEARCH NEWS
Research news. A special issue on Cell Signaling in PKD, led by Drs. Albert C.M. Ong and Vicente E. Torres, and consisting of 30 papers from many respected members of the PKD research community. Cellular signaling in PKD foreword: dedicated to the memory of Dr. Jared James Grantham (1936–2016); without his vision, achievements and impact onWHAT IS ADPKD?
ADPKD is a painful disease that impacts quality of life. The average size of a typical kidney is a human fist. Polycystic kidneys can get much larger, some growing as large as a football, and weighing up to 30 pounds each. Unlike some genetic diseases, ADPKD does not skip a generation meaning it often affects many people in one family. YALE SCHOOL OF MEDICINE The clinical services provided by our nephrologists and associated clinical teams cover all aspects of kidney disease, both in the inpatient and outpatient settings. The faculty members of the Yale Section of Nephrology provide broad expertise in the diagnosis and management of acute and chronic kidney diseases. We work together as a committed clinical practice CHRONIC PAIN MANAGEMENT Chronic pain management. Chronic pain is one of the most common problems for patients with PKD. The pain is usually in the back or the side and occasionally in the stomach. It can be intermittent and mild requiring only occasional pain medicine such as acetaminophen (Tylenol). However, in a small number of patients with severe PKD, thepain can
FREEDOM-1: CLINICAL STUDY FOR LIVING DONOR KIDNEY Overview The FREEDOM-1 Study is a clinical research study of an investigational cell therapy, called FCR001. The purpose of this study is to learn more about whether FCR001 can prevent the rejection of living donor kidney transplants without the need for lifelong anti-rejection drugs. FREEDOM-1 is a Phase 3 clinical trial. It willcompare the
POLYCYSTIC KIDNEY DISEASE The PKD Foundation is the only organization in the U.S. solely dedicated to finding treatments and a cure for polycystic kidney disease (PKD) and to improving the lives of those it affects. Since 1982, we have proudly funded more than $50 million in PKD research and leveraged $1.5 billion in government funding, while serving our localCORONAVIRUS
Coronavirus Disease 2019 (COVID-19) is thought to spread mainly from person-to-person (within about 6 feet) through small drops of liquid made when an infected person coughs or sneezes (known as respiratory droplets). Having chronic kidney disease of any stage increases risk for severe illness from COVID-19. PKD CONNECT CONFERENCE 2021 PKDCON is virtual in 2021. Registration is now open for our virtual PKDCON event! Free to attend for the first time, this year’s PKD Connect Conference will bring together patients, caregivers, health care providers, and researchers from the safety of their homes. This virtual event features the latest in research and treatment optionswhile
EDUCATION | PKD FOUNDATION Education - With PKD Connect, no one will ever face polycystic kidney disease alone. Because patients, family and loved ones will always beconnected to others
FIND A CLINIC
The PKD Foundation is committed to helping patients find medical care for their PKD. This tool has been created to help you assess the best clinics close to where you live or work. Enter your zip code above and we’ll help you compare and identify a PKD clinic or PKD-familiarnephrologist.
RESEARCH NEWS
Research news. A special issue on Cell Signaling in PKD, led by Drs. Albert C.M. Ong and Vicente E. Torres, and consisting of 30 papers from many respected members of the PKD research community. Cellular signaling in PKD foreword: dedicated to the memory of Dr. Jared James Grantham (1936–2016); without his vision, achievements and impact onWHAT IS ADPKD?
ADPKD is a painful disease that impacts quality of life. The average size of a typical kidney is a human fist. Polycystic kidneys can get much larger, some growing as large as a football, and weighing up to 30 pounds each. Unlike some genetic diseases, ADPKD does not skip a generation meaning it often affects many people in one family. YALE SCHOOL OF MEDICINE The clinical services provided by our nephrologists and associated clinical teams cover all aspects of kidney disease, both in the inpatient and outpatient settings. The faculty members of the Yale Section of Nephrology provide broad expertise in the diagnosis and management of acute and chronic kidney diseases. We work together as a committed clinical practice CHRONIC PAIN MANAGEMENT Chronic pain management. Chronic pain is one of the most common problems for patients with PKD. The pain is usually in the back or the side and occasionally in the stomach. It can be intermittent and mild requiring only occasional pain medicine such as acetaminophen (Tylenol). However, in a small number of patients with severe PKD, thepain can
FREEDOM-1: CLINICAL STUDY FOR LIVING DONOR KIDNEY Overview The FREEDOM-1 Study is a clinical research study of an investigational cell therapy, called FCR001. The purpose of this study is to learn more about whether FCR001 can prevent the rejection of living donor kidney transplants without the need for lifelong anti-rejection drugs. FREEDOM-1 is a Phase 3 clinical trial. It willcompare the
POLYCYSTIC KIDNEY DISEASE The PKD Foundation is the only organization in the U.S. solely dedicated to finding treatments and a cure for polycystic kidney disease (PKD) and to improving the lives of those it affects. Since 1982, we have proudly funded more than $50 million in PKD research and leveraged $1.5 billion in government funding, while serving our localWHAT IS ADPKD?
ADPKD is a painful disease that impacts quality of life. The average size of a typical kidney is a human fist. Polycystic kidneys can get much larger, some growing as large as a football, and weighing up to 30 pounds each. Unlike some genetic diseases, ADPKD does not skip a generation meaning it often affects many people in one family. DIET AND PKD: WHAT YOU SHOULD EAT FOR YOUR STAGE Fruits, vegetables, nuts, whole grains, and vegetable oils are the basis of the Mediterranean diet. However, fish is the main source of protein, while poultry and dairy products are advised in moderation. It’s recommended you: Drink a lot of water. People with PKD should drink a minimum of 3 liters of water per day to reduce the risk ofWHAT IS ARPKD?
Autosomal recessive polycystic kidney disease (ARPKD) is a rare genetic disorder occurring in approximately 1 in 25,000 children.It affects boys and girls equally and can cause death in the first month of life. If a child with ARPKD survives the newborn period, the chances of survival are good. WHAT ARE THE STAGES OF ADPKD? What are the stages of ADPKD? - With PKD Connect, no one will ever face polycystic kidney disease alone. Because patients, family and loved ones will always be connected to others who understand firsthand what you’re going through. TOLVAPTAN | PKD FOUNDATION Tolvaptan is a medication (taken twice a day as an oral pill) that affects how the kidneys control the concentration of urine. It has been shown to slow down the growth of kidney cysts (total kidney volume) when it is taken for a long time (several years) by adults at CHRONIC PAIN MANAGEMENT Chronic pain management. Chronic pain is one of the most common problems for patients with PKD. The pain is usually in the back or the side and occasionally in the stomach. It can be intermittent and mild requiring only occasional pain medicine such as acetaminophen (Tylenol). However, in a small number of patients with severe PKD, thepain can
KIDNEY CYST SCLEROTHERAPY Kidney Cyst Sclerotherapy - With PKD Connect, no one will ever face polycystic kidney disease alone. Because patients, family and loved ones will always be connected to others who understand firsthand what you’re going through.KANSAS CITY
Nicole Harr Chapter Coordinator. I joined the PKD Foundation as a Volunteer Chapter Coordinator 12 years ago! I was looking for a way to raise money for research and I found the most amazing people in Kansas City and across the country that are looking for the same thing – a day without worry that PKD will impact our children and futuregenerations.
ATLANTA | PKD FOUNDATION Email volunteers@pkdcure.org for more information and to get involved. Now, as always, the PKD Foundation is committed to our mission of giving hope, advocating for patients, and building a community for all impacted by PKD. We'll continue supporting our community by providing important resources and timely updates on social media.MENUMENU
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\n PKD Foundation\u2019s response to COVID-19\n ","tablet":"","phone":" PKD Foundation\u2019s response to COVID-19"}},"slug":"et_pb_fullwidth_code"}" data-et-multi-view-load-tablet-hidden="true" data-et-multi-view-load-phone-hidden="true"> PKD Foundation’s response to COVID-19 Virtual and free in 2021!June 25–26
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ABOUT THE PKD FOUNDATION The PKD Foundation is the only organization in the U.S. solely dedicated to finding treatments and a cure for polycystic kidney disease (PKD) and to improving the lives of those it affects. Since 1982, we have proudly funded more than $50 million in PKD research and leveraged $1.5 billion in government funding, while serving our local communities across the country. We are inspired by our mission. And driven by our vision.1,870
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While a specific diet won’t make polycystic kidneys better, it is ideal to eat a balanced and healthy diet.LEARN MORE
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THE SCOOP ON PKDCON 2021 Published on June 1, 2021 | In a few weeks, the PKD Foundation will host its biggest educational event, PKDRead MoreWEBINAR: PKD BASICS
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With PKD Connect, no one will ever face polycystic kidney disease alone. Because patients, family and loved ones will always be connected to others who understand firsthand what you’re going through. Whether you are looking for information, resources or just a shoulder to lean on, PKD Connect gives you the support to keep hopewithin reach.
COMMUNITY AND SUPPORT You’re not alone. Find a mentor, call our Hope line, or join aChapter.
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