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CYSTICFIBROSIS.COM
CysticFibrosis.com supports the largest and oldest global Cystic Fibrosis community on the web, founded in 1996, comprising patients, caregivers, healthcare professionals and industry service providers. In addition to the forums, the site contains information on clinical trials, gene therapy, testing, associations, research and events. NEWLY DIAGNOSED: WHAT IS CYSTIC FIBROSIS Cystic Fibrosis (CF) is an inherited genetic disease caused by a mutation of the CFTR gene which affects multiple systems of the body, such as the respiratory, intestinal and reproductive systems. CF is is in your unborn or newborn baby’s “genes,” half of which are inherited from you and half of are inherited from the other parent. CYSTIC FIBROSIS GENETICS: KNOW YOUR CF MUTATIONS Cystic Fibrosis genetics: Know Your CF Mutations. Source: CFF.org. For the first time, drugs are available that treat the underlying cause of the disease in people with certain cystic fibrosis mutations. As new therapies targeting specific mutations of Cystic Fibrosis genetics are developed and become available, it will be increasingly CYSTIC FIBROSIS TREATMENT: HYPERTONIC SALINE QUESTIONS HTS is sterile water into which common salt (sodium chloride, NaCl) has been dissolved. The degree of salinity, or salt concentration must be greater than 0.9% in order to be consider “hypertonic.”. Relative to the body’s normal physiologic salt concentration, 0.9% saline is considered “isotonic,” anything below 0.9% is considered TAURINAC NOW AVAILABLE TauriNAC Now Available. This summer, Sharktank Research Foundation and Planetary Biosciences released a product called TauriNAC. It contains NAC (N-Acetylcysteine), taurine, magnesium, green tea extract, vitamin C, and some other things. A study from Stanford University has shown that NAC helps lung function in CF patients. CYSTIC FIBROSIS FORUM cystic fibrosis,forum,CF,Cystic,Fibrosis,CysticFibrosis. In this forum, we invite you to post your fundraisers, ideas, innovations, businesses, start-ups, eventsetc. TRIKAFTA Q&A, EXPERIENCES, ETC. Which is one of the drugs in all three (Kalydeco, Symdeko, Trikafta) modulators. In Symdeko and Trikafta, there is a nightime dose which is essentially just a booster of the Ivacaftor. They found that if they have us stop taking the nightime dose, our liver functions have improved and we have remained stable with just taking the morningdose.
TRIKAFTA AND LIVER DISEASE Aug 7, 2020. #4. momofteen said: My 27 year old son started Trikafta a few months ago. His recent bloodwork showed one of his liver enzymes (not sure which one) were 5x above normal. Needless to say his doctor instructed him to stop taking Trikafta immediately. They will recheck in two weeks. This is so discouraging as you can imagine. TRIKAFTA VS ORKAMBI: EFFECTIVENESS COMPARISON? A med like Orkambi, make those gates straighter but are still a little hunched over. Trikafta makes those gates stand straighter than Orkambi/ Symdeko. The third drug is what corrects it even more, hence it's nickname "triple combo". It also covers more mutations because 90% of CFers make some amount of chloride ion, that amount depends on ANY OTHER TRANSGENDER CFERS OUT THERE? Hey forum, Living with CF has been difficult enough, but the past couple years have resulted in the realization that I'm trans (FtM). This wouldn't be as much of an issue for me if my parents weren't so fundamentally against it. I haven't come out to them, but transness and trans celebrities hasCYSTICFIBROSIS.COM
CysticFibrosis.com supports the largest and oldest global Cystic Fibrosis community on the web, founded in 1996, comprising patients, caregivers, healthcare professionals and industry service providers. In addition to the forums, the site contains information on clinical trials, gene therapy, testing, associations, research and events. NEWLY DIAGNOSED: WHAT IS CYSTIC FIBROSIS Cystic Fibrosis (CF) is an inherited genetic disease caused by a mutation of the CFTR gene which affects multiple systems of the body, such as the respiratory, intestinal and reproductive systems. CF is is in your unborn or newborn baby’s “genes,” half of which are inherited from you and half of are inherited from the other parent. CYSTIC FIBROSIS GENETICS: KNOW YOUR CF MUTATIONS Cystic Fibrosis genetics: Know Your CF Mutations. Source: CFF.org. For the first time, drugs are available that treat the underlying cause of the disease in people with certain cystic fibrosis mutations. As new therapies targeting specific mutations of Cystic Fibrosis genetics are developed and become available, it will be increasingly CYSTIC FIBROSIS TREATMENT: HYPERTONIC SALINE QUESTIONS HTS is sterile water into which common salt (sodium chloride, NaCl) has been dissolved. The degree of salinity, or salt concentration must be greater than 0.9% in order to be consider “hypertonic.”. Relative to the body’s normal physiologic salt concentration, 0.9% saline is considered “isotonic,” anything below 0.9% is considered TAURINAC NOW AVAILABLE TauriNAC Now Available. This summer, Sharktank Research Foundation and Planetary Biosciences released a product called TauriNAC. It contains NAC (N-Acetylcysteine), taurine, magnesium, green tea extract, vitamin C, and some other things. A study from Stanford University has shown that NAC helps lung function in CF patients. CYSTIC FIBROSIS FORUM cystic fibrosis,forum,CF,Cystic,Fibrosis,CysticFibrosis. In this forum, we invite you to post your fundraisers, ideas, innovations, businesses, start-ups, eventsetc. TRIKAFTA Q&A, EXPERIENCES, ETC. Which is one of the drugs in all three (Kalydeco, Symdeko, Trikafta) modulators. In Symdeko and Trikafta, there is a nightime dose which is essentially just a booster of the Ivacaftor. They found that if they have us stop taking the nightime dose, our liver functions have improved and we have remained stable with just taking the morningdose.
TRIKAFTA AND LIVER DISEASE Aug 7, 2020. #4. momofteen said: My 27 year old son started Trikafta a few months ago. His recent bloodwork showed one of his liver enzymes (not sure which one) were 5x above normal. Needless to say his doctor instructed him to stop taking Trikafta immediately. They will recheck in two weeks. This is so discouraging as you can imagine. TRIKAFTA VS ORKAMBI: EFFECTIVENESS COMPARISON? A med like Orkambi, make those gates straighter but are still a little hunched over. Trikafta makes those gates stand straighter than Orkambi/ Symdeko. The third drug is what corrects it even more, hence it's nickname "triple combo". It also covers more mutations because 90% of CFers make some amount of chloride ion, that amount depends on ANY OTHER TRANSGENDER CFERS OUT THERE? Hey forum, Living with CF has been difficult enough, but the past couple years have resulted in the realization that I'm trans (FtM). This wouldn't be as much of an issue for me if my parents weren't so fundamentally against it. I haven't come out to them, but transness and trans celebrities has NEWLY DIAGNOSED: WHAT IS CYSTIC FIBROSIS Cystic Fibrosis (CF) is an inherited genetic disease caused by a mutation of the CFTR gene which affects multiple systems of the body, such as the respiratory, intestinal and reproductive systems. CF is is in your unborn or newborn baby’s “genes,” half of which are inherited from you and half of are inherited from the other parent. WHAT IS CYSTIC FIBROSIS CysticFibrosis.com is one of the world's largest social media networks dedicated exclusively to the cystic fibrosis community. In addition to the forums, the site contains information on clinical trials, gene therapy, testing, associations, research and events. ABOUT US - A CYSTIC FIBROSIS COMMUNITY Peter Barnett DPT, OCS. Co-founder and treasurer of CysticFibrosis.com, Peter Barnett is a veteran of the Vietnam conflict, husband of Jeanne Barnett and a Doctor of Physical Therapy. Peter is a graduate of University of Vermont, Columbia University and Simmons College. Peter has had a private physical and occupational therapy practice in New CYSTIC FIBROSIS GENETICS: KNOW YOUR CF MUTATIONS Cystic Fibrosis genetics: Know Your CF Mutations. Source: CFF.org. For the first time, drugs are available that treat the underlying cause of the disease in people with certain cystic fibrosis mutations. As new therapies targeting specific mutations of Cystic Fibrosis genetics are developed and become available, it will be increasingly DIGITAL SPIROMETRY AND THE CYSTIC FIBROSIS PATIENT For Cystic Fibrosis, the spirometry test given by the clinic is a very important measurement. From Wikipedia we learn: “Spirometry (meaning the measuring of breath) is the most common of the pulmonary function tests (PFTs). It measures lung function, specifically the amount (volume) and/or speed (flow) of air that can be inhaled and exhaled. CLIMATE CHANGE AND RESPIRATORY INFECTIONS (CYSTIC FIBROSIS A recent article in the journal of the American Thoracic Society looks at how climate change is influencing respiratory infections.. The authors describe studies that have shown a connection between weather events and shifting respiratory disease levels in the general populations, but more significantly in children and the elderly. AMBER'S CYSTIC FIBROSIS MIRACLE Receiving The Call. I finally received the gift of life on March 13, 2007. It felt like the longest two years of my life! Due to further complications from previous kidney damage (before transplant caused by Amikacin) and ultimate renal failure from the anti-rejection medication, my mother donated her own kidney to save my life only 4months later.
TO | CYSTIC FIBROSIS FORUM It all depends on the bug you have and your doctors are just finding the right combination to kick that bugs butt. Also don't get too upset about your chest pain. You have CF and you're sickyou're lungs are gonna hurt from time to timelol. Just be aware of your breathing and your game plan of calling the doctors if it gets really bad, is TRIKAFTA Q&A, EXPERIENCES, ETC. On the 9th, I was a 74% and today a 96% after just my first dose of Trikafta. The highest I have ever had before was a 92%. In any event, I am already suddenly coughing mucus up each time when I haven’t been coughing any up previously at all. TRIKAFTA VS ORKAMBI: EFFECTIVENESS COMPARISON? A med like Orkambi, make those gates straighter but are still a little hunched over. Trikafta makes those gates stand straighter than Orkambi/ Symdeko. The third drug is what corrects it even more, hence it's nickname "triple combo". It also covers more mutations because 90% of CFers make some amount of chloride ion, that amount depends onCYSTICFIBROSIS.COM
CysticFibrosis.com supports the largest and oldest global Cystic Fibrosis community on the web, founded in 1996, comprising patients, caregivers, healthcare professionals and industry service providers. In addition to the forums, the site contains information on clinical trials, gene therapy, testing, associations, research and events. WHAT IS CYSTIC FIBROSIS CysticFibrosis.com is one of the world's largest social media networks dedicated exclusively to the cystic fibrosis community. In addition to the forums, the site contains information on clinical trials, gene therapy, testing, associations, research and events. NEWLY DIAGNOSED: WHAT IS CYSTIC FIBROSIS Cystic Fibrosis (CF) is an inherited genetic disease caused by a mutation of the CFTR gene which affects multiple systems of the body, such as the respiratory, intestinal and reproductive systems. CF is is in your unborn or newborn baby’s “genes,” half of which are inherited from you and half of are inherited from the other parent. CYSTIC FIBROSIS GENETICS: KNOW YOUR CF MUTATIONS Cystic Fibrosis genetics: Know Your CF Mutations. Source: CFF.org. For the first time, drugs are available that treat the underlying cause of the disease in people with certain cystic fibrosis mutations. As new therapies targeting specific mutations of Cystic Fibrosis genetics are developed and become available, it will be increasingly TAURINAC NOW AVAILABLE TauriNAC Now Available. This summer, Sharktank Research Foundation and Planetary Biosciences released a product called TauriNAC. It contains NAC (N-Acetylcysteine), taurine, magnesium, green tea extract, vitamin C, and some other things. A study from Stanford University has shown that NAC helps lung function in CF patients. CYSTIC FIBROSIS FORUMCYSTIC FIBROSIS BLOGCYSTIC FIBROSIS SUPPORTCYSTIC FIBROSIS WEBSITECYSTIC FIBROSIS ONLINE HEALTH COMMUNITY cystic fibrosis,forum,CF,Cystic,Fibrosis,CysticFibrosis. In this forum, we invite you to post your fundraisers, ideas, innovations, businesses, start-ups, eventsetc. TRIKAFTA Q&A, EXPERIENCES, ETC. Which is one of the drugs in all three (Kalydeco, Symdeko, Trikafta) modulators. In Symdeko and Trikafta, there is a nightime dose which is essentially just a booster of the Ivacaftor. They found that if they have us stop taking the nightime dose, our liver functions have improved and we have remained stable with just taking the morningdose.
DIY NEBULIZER STERILIZER HACK FOR CYSTIC FIBROSIS How they work is you fill the bottom area up with water from the little cup, put the lid on and it boils to create hot steam (which cooks the eggsor the nebs) until the water has evaporated and then it either beeps or switches off. I use the water cup to fill it to the maximum allowed amount so that it steams for as long as possible. TO | CYSTIC FIBROSIS FORUM It all depends on the bug you have and your doctors are just finding the right combination to kick that bugs butt. Also don't get too upset about your chest pain. You have CF and you're sickyou're lungs are gonna hurt from time to timelol. Just be aware of your breathing and your game plan of calling the doctors if it gets really bad, is ANY OTHER TRANSGENDER CFERS OUT THERE? Hey forum, Living with CF has been difficult enough, but the past couple years have resulted in the realization that I'm trans (FtM). This wouldn't be as much of an issue for me if my parents weren't so fundamentally against it. I haven't come out to them, but transness and trans celebrities hasCYSTICFIBROSIS.COM
CysticFibrosis.com supports the largest and oldest global Cystic Fibrosis community on the web, founded in 1996, comprising patients, caregivers, healthcare professionals and industry service providers. In addition to the forums, the site contains information on clinical trials, gene therapy, testing, associations, research and events. WHAT IS CYSTIC FIBROSIS CysticFibrosis.com is one of the world's largest social media networks dedicated exclusively to the cystic fibrosis community. In addition to the forums, the site contains information on clinical trials, gene therapy, testing, associations, research and events. NEWLY DIAGNOSED: WHAT IS CYSTIC FIBROSIS Cystic Fibrosis (CF) is an inherited genetic disease caused by a mutation of the CFTR gene which affects multiple systems of the body, such as the respiratory, intestinal and reproductive systems. CF is is in your unborn or newborn baby’s “genes,” half of which are inherited from you and half of are inherited from the other parent. CYSTIC FIBROSIS GENETICS: KNOW YOUR CF MUTATIONS Cystic Fibrosis genetics: Know Your CF Mutations. Source: CFF.org. For the first time, drugs are available that treat the underlying cause of the disease in people with certain cystic fibrosis mutations. As new therapies targeting specific mutations of Cystic Fibrosis genetics are developed and become available, it will be increasingly TAURINAC NOW AVAILABLE TauriNAC Now Available. This summer, Sharktank Research Foundation and Planetary Biosciences released a product called TauriNAC. It contains NAC (N-Acetylcysteine), taurine, magnesium, green tea extract, vitamin C, and some other things. A study from Stanford University has shown that NAC helps lung function in CF patients. CYSTIC FIBROSIS FORUMCYSTIC FIBROSIS BLOGCYSTIC FIBROSIS SUPPORTCYSTIC FIBROSIS WEBSITECYSTIC FIBROSIS ONLINE HEALTH COMMUNITY cystic fibrosis,forum,CF,Cystic,Fibrosis,CysticFibrosis. In this forum, we invite you to post your fundraisers, ideas, innovations, businesses, start-ups, eventsetc. TRIKAFTA Q&A, EXPERIENCES, ETC. Which is one of the drugs in all three (Kalydeco, Symdeko, Trikafta) modulators. In Symdeko and Trikafta, there is a nightime dose which is essentially just a booster of the Ivacaftor. They found that if they have us stop taking the nightime dose, our liver functions have improved and we have remained stable with just taking the morningdose.
DIY NEBULIZER STERILIZER HACK FOR CYSTIC FIBROSIS How they work is you fill the bottom area up with water from the little cup, put the lid on and it boils to create hot steam (which cooks the eggsor the nebs) until the water has evaporated and then it either beeps or switches off. I use the water cup to fill it to the maximum allowed amount so that it steams for as long as possible. TO | CYSTIC FIBROSIS FORUM It all depends on the bug you have and your doctors are just finding the right combination to kick that bugs butt. Also don't get too upset about your chest pain. You have CF and you're sickyou're lungs are gonna hurt from time to timelol. Just be aware of your breathing and your game plan of calling the doctors if it gets really bad, is ANY OTHER TRANSGENDER CFERS OUT THERE? Hey forum, Living with CF has been difficult enough, but the past couple years have resulted in the realization that I'm trans (FtM). This wouldn't be as much of an issue for me if my parents weren't so fundamentally against it. I haven't come out to them, but transness and trans celebrities has NEWLY DIAGNOSED: WHAT IS CYSTIC FIBROSIS Cystic Fibrosis (CF) is an inherited genetic disease caused by a mutation of the CFTR gene which affects multiple systems of the body, such as the respiratory, intestinal and reproductive systems. CF is is in your unborn or newborn baby’s “genes,” half of which are inherited from you and half of are inherited from the other parent. ABOUT US - A CYSTIC FIBROSIS COMMUNITY Peter Barnett DPT, OCS. Co-founder and treasurer of CysticFibrosis.com, Peter Barnett is a veteran of the Vietnam conflict, husband of Jeanne Barnett and a Doctor of Physical Therapy. Peter is a graduate of University of Vermont, Columbia University and Simmons College. Peter has had a private physical and occupational therapy practice in New CYSTIC FIBROSIS ARTICLES AND BLOGS September 8, 2018. 1.2k 15. CysticFibrosis.com is one of the world's largest social media networks dedicated exclusively to the cystic fibrosis community. In addition to the forums, the site contains information on clinical trials, gene therapy, testing, associations, research and events. Read our website disclaimer. DIGITAL SPIROMETRY AND THE CYSTIC FIBROSIS PATIENT For Cystic Fibrosis, the spirometry test given by the clinic is a very important measurement. From Wikipedia we learn: “Spirometry (meaning the measuring of breath) is the most common of the pulmonary function tests (PFTs). It measures lung function, specifically the amount (volume) and/or speed (flow) of air that can be inhaled and exhaled. NEW DRUG (THYMOSIN ALPHA 1) DISCOVERY: POTENTIAL FOR According to the article, Thymosin alpha 1 (Tα1) is a novel therapeutic single molecule-based therapy that could correct genetic and tissue defects and also significantly reduce inflammation seen in cystic fibrosis patients. Quoted: “Cystic fibrosis is the result of mutations in the gene encoding the protein called the cystic fibrosis AMBER'S CYSTIC FIBROSIS MIRACLE Receiving The Call. I finally received the gift of life on March 13, 2007. It felt like the longest two years of my life! Due to further complications from previous kidney damage (before transplant caused by Amikacin) and ultimate renal failure from the anti-rejection medication, my mother donated her own kidney to save my life only 4months later.
DIY NEBULIZER STERILIZER HACK FOR CYSTIC FIBROSIS How they work is you fill the bottom area up with water from the little cup, put the lid on and it boils to create hot steam (which cooks the eggsor the nebs) until the water has evaporated and then it either beeps or switches off. I use the water cup to fill it to the maximum allowed amount so that it steams for as long as possible. TRIKAFTA AND LIVER DISEASE Aug 7, 2020. #4. momofteen said: My 27 year old son started Trikafta a few months ago. His recent bloodwork showed one of his liver enzymes (not sure which one) were 5x above normal. Needless to say his doctor instructed him to stop taking Trikafta immediately. They will recheck in two weeks. This is so discouraging as you can imagine.GLOBAL HEALTHCARE
First Heart failure monitoring system in "Heart Hospital of Austin" - Texas. emilymainzer. Oct 3, 2014. Replies. NIGHT OXYGEN OR CPAP nocode. New member. Dec 12, 2013. #2. Hi, I think night oxygen could help based on the feeling you have that you are "drowning" sometimes when you wake up. If you can get a sleep study done with your cf team that would be most helpful. My sleep study indicated that I desat to around 80% at some points during my sleep so I use it.__ Navigation
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WE OFFER THE CYSTIC FIBROSIS COMMUNITY AN ACTIVE FORUM, BLOGS AND MEDICAL ARTICLES, AND A WEALTH OF OTHER RESOURCES: Our forums continue to be an excellent way for the community to connect, and a searchable source of information – 1 million threads! Join in, or just browse the topics to see what others are saying.Visit the forum
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ABOUT CYSTICFIBROSIS.COM CysticFibrosis.com supports the largest and oldest global Cystic Fibrosis community on the web, founded in 1996, comprising patients, caregivers, healthcare professionals and industry service providers. In addition to the forums, the site contains information on clinical trials, gene therapy, testing, associations, research and events. We believe in harnessing the knowledge of the patient and caregiver community to achieve participatory healthcare. Our CF community holds a wealth of knowledge on the disease, challenges they face and possible solutions they envision. Read our website disclaimer.
NEWLY DIAGNOSED? READ THIS ARTICLE AND LEARN MORE ABOUT CYSTIC FIBROSIS AND MUTATIONS (WRITTEN BY MOM OF A YOUNG CHILD WITH CF) HOW TO JOIN THIS COMMUNITY? * It is free to join the forums, you can register as a new forummember here.
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