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WHAT IS VHL? : VHL ALLIANCESEE MORE ON VHL.ORG 2021 MYVHL DAY CELEBRATION : VHL ALLIANCE My journey as a #VHLWarrior began when I was 4 years old. Last modified: June 2, 2021 Donate; Contact; Store; Press Room; NewsletterSign Up
UNTIL A CURE IS FOUND, SURVEILLANCE Updated 10/9/2020 VHLA Suggested Active Surveillance Guidelines Until a cure is found, surveillance is a patient’s strongest defense to prevent severe VHL complications. Surveillance is the testing of individuals at risk for von Hippel-Lindau disease (VHL) who do not HUNTSMAN CANCER INSTITUTE : VHL ALLIANCE Huntsman Cancer Institute VHL Comprehensive Clinical Care Center Salt Lake City, UT. Point of Contact: Kristen Pauley, MS, CGC Phone: 801-213-8449 Email: VHLClinic@hci.utah.edu Website. CCC Spotlight: Samantha Greenberg, MS, MPH, CGC THE JOHNS HOPKINS HOSPITAL : VHL ALLIANCE The Johns Hopkins Hospital VHL Clinical Care Center Baltimore, MD. Point of Contact: Laurie Bruch Phone: 410-464-6555 x38035 Email: abruch1@jhmi.edu. GENERALMAYO CLINIC
Mayo Clinic – Scottsdale VHL Clinical Care Center Phoenix, AZ. Point of Contact: Amy Burgoon Phone: 480-342-6263 Email: burgoon.amy@mayo.edu Website. Mayo Scottsdale Patient Resource Guide(pdf download)
UNIVERSITY OF MICHIGAN MEDICAL CENTER : VHL ALLIANCE University of Michigan Medical Center VHL Comprehensive Clinical Care Center Ann Arbor, MI. Point of Contact: Jenae Osborne, MS, CGC Phone: 734-647-0822 Email: jenaej@umich.edu Website. UMichigan Patient Resource Guide (pdf download) INDIANA UNIVERSITY MEDICAL CENTER : VHL ALLIANCE Indiana University Medical Center. VHL Clinical Care Center. Indianapolis, IN. Point of Contact: Amy Tennant, RN, BSN. Phone: 317-962-0867. Email : atennant1@IUHealth.org. IU Patient Resource Guide (pdf download) Slides and Videos from the 2019 VHLA AnnualMeeting.
VHLA SUGGESTED ACTIVE SURVEILLANCE GUIDELINES VHL Alliance vhl.org 1208 VFW Parkway, Suite 303, Boston, MA 02132 617.277.5667 Page 1 of 2 VHLA Suggested Active Surveillance Guidelines HOME - VHL ALLIANCEPATIENTSCLINICIANSRESEARCHERSGIVEABOUTWHAT IS VHL The VHL Alliance is a major resource for VHL diagnosis, screening and treatment. The “Professionals” section contains a wealth of information for health professionals seeking to know more about von Hippel-Lindau disease. The VHL Alliance is a leading funder of VHL research with over $2.6 million granted to support studies designed tofind a
WHAT IS VHL? : VHL ALLIANCESEE MORE ON VHL.ORG 2021 MYVHL DAY CELEBRATION : VHL ALLIANCE My journey as a #VHLWarrior began when I was 4 years old. Last modified: June 2, 2021 Donate; Contact; Store; Press Room; NewsletterSign Up
UNTIL A CURE IS FOUND, SURVEILLANCE Updated 10/9/2020 VHLA Suggested Active Surveillance Guidelines Until a cure is found, surveillance is a patient’s strongest defense to prevent severe VHL complications. Surveillance is the testing of individuals at risk for von Hippel-Lindau disease (VHL) who do not HUNTSMAN CANCER INSTITUTE : VHL ALLIANCE Huntsman Cancer Institute VHL Comprehensive Clinical Care Center Salt Lake City, UT. Point of Contact: Kristen Pauley, MS, CGC Phone: 801-213-8449 Email: VHLClinic@hci.utah.edu Website. CCC Spotlight: Samantha Greenberg, MS, MPH, CGC THE JOHNS HOPKINS HOSPITAL : VHL ALLIANCE The Johns Hopkins Hospital VHL Clinical Care Center Baltimore, MD. Point of Contact: Laurie Bruch Phone: 410-464-6555 x38035 Email: abruch1@jhmi.edu. GENERALMAYO CLINIC
Mayo Clinic – Scottsdale VHL Clinical Care Center Phoenix, AZ. Point of Contact: Amy Burgoon Phone: 480-342-6263 Email: burgoon.amy@mayo.edu Website. Mayo Scottsdale Patient Resource Guide(pdf download)
UNIVERSITY OF MICHIGAN MEDICAL CENTER : VHL ALLIANCE University of Michigan Medical Center VHL Comprehensive Clinical Care Center Ann Arbor, MI. Point of Contact: Jenae Osborne, MS, CGC Phone: 734-647-0822 Email: jenaej@umich.edu Website. UMichigan Patient Resource Guide (pdf download) INDIANA UNIVERSITY MEDICAL CENTER : VHL ALLIANCE Indiana University Medical Center. VHL Clinical Care Center. Indianapolis, IN. Point of Contact: Amy Tennant, RN, BSN. Phone: 317-962-0867. Email : atennant1@IUHealth.org. IU Patient Resource Guide (pdf download) Slides and Videos from the 2019 VHLA AnnualMeeting.
VHLA SUGGESTED ACTIVE SURVEILLANCE GUIDELINES VHL Alliance vhl.org 1208 VFW Parkway, Suite 303, Boston, MA 02132 617.277.5667 Page 1 of 2 VHLA Suggested Active Surveillance Guidelines WHAT IS VHL? : VHL ALLIANCE What is VHL? VHL disease is a genetic condition characterized by blood vessel tumors in up to ten areas of the body. These tumors can be benign or cancerous. VHL, or von Hippel-Lindau, is named after two physicians that described these tumors in different parts of the body. Eugen von Hippel was an ophthalmologist who first described theseINTRODUCTION TO VHL
WHAT IS VHL? • von Hippel-Lindau (VHL) disease is a hereditary cancer syndrome that increases one’s risk for several types of tumors • Features of the condition can occur in childhood, adolescence or adulthood HEALTHY LIFESTYLE : VHL ALLIANCE A healthy lifestyle will help improve your overall health and well-being. Be active and make time for regular exercise. Choose healthy foods and a balanced diet. Consult a dietitian or nutritionist as needed. Strive for balance in both personal and work life. Make time for important relationships. Ask for help (including emotional,physical
HUNTSMAN CANCER INSTITUTE : VHL ALLIANCE Huntsman Cancer Institute VHL Comprehensive Clinical Care Center Salt Lake City, UT. Point of Contact: Kristen Pauley, MS, CGC Phone: 801-213-8449 Email: VHLClinic@hci.utah.edu Website. CCC Spotlight: Samantha Greenberg, MS, MPH, CGC ACTIVE SURVEILLANCE : VHL ALLIANCE Whether a person currently has a VHL tumor, has a positive genetic test for VHL, or has a known family history for the disease, they should adhere to the Active Surveillance Guidelines. Since it is impossible to predict how the disease will present or progress, active surveillance is exceptionally important for people living with VHL. TREATMENT CONSIDERATIONS : VHL ALLIANCE VHL disease is different in every person, so there are no universal treatment recommendations. Appropriate treatment options can only be determined by careful evaluation of each person’s unique situation including symptoms, test results, imaging studies, and KIDNEY CYSTS, RENAL CELL CARCINOMA : VHL ALLIANCE However, in VHL each cyst may contain a small tumor, and it is possible for these tumors to become renal cell carcinomas (RCC), a form of kidney cancer. There is widespread agreement on the optimal approach to dealing with VHL kidney tumors. In VHL, a person with kidney involvement typically has a series of tumors on both kidneys,which develop
INDIANA UNIVERSITY MEDICAL CENTER : VHL ALLIANCE Indiana University Medical Center. VHL Clinical Care Center. Indianapolis, IN. Point of Contact: Amy Tennant, RN, BSN. Phone: 317-962-0867. Email : atennant1@IUHealth.org. IU Patient Resource Guide (pdf download) Slides and Videos from the 2019 VHLA AnnualMeeting.
2020 GUIDELINES SURVEILLANCE OF PATIENTS WITH VON HIPPEL 2020 Guidelines Surveillance of Patients with von Hippel-Lindau Disease: NewGuidelines UT SOUTHWESTERN MEDICAL CENTER : VHL ALLIANCE UT Southwestern Medical Center VHL Clinical Care Center Dallas, TX. Points of Contact: Brian Reys, MS, CGC Amber Gemmell, MS, CGC Remington Fenter, MS, CGC HOME - VHL ALLIANCEPATIENTSCLINICIANSRESEARCHERSGIVEABOUTWHAT IS VHL The VHL Alliance is a major resource for VHL diagnosis, screening and treatment. The “Professionals” section contains a wealth of information for health professionals seeking to know more about von Hippel-Lindau disease. The VHL Alliance is a leading funder of VHL research with over $2.6 million granted to support studies designed tofind a
WHAT IS VHL? : VHL ALLIANCESEE MORE ON VHL.ORGINTRODUCTION TO VHL
WHAT IS VHL? • von Hippel-Lindau (VHL) disease is a hereditary cancer syndrome that increases one’s risk for several types of tumors • Features of the condition can occur in childhood, adolescence or adulthood INTERNATIONAL MEDICAL/RESEARCH SYMPOSIUM : VHL ALLIANCE The International VHL Medical/Research Symposium, Amsterdam (Virtual), Netherlands, 29/10/2020-31/10/2020 has been accredited by the European Accreditation Council for Continuing Medical Education (EACCME ®) with 12 European CME credits (ECMEC®s). Each medical specialist should claim only those hours of credit that he/she actually spent in THE JOHNS HOPKINS HOSPITAL : VHL ALLIANCE The Johns Hopkins Hospital VHL Clinical Care Center Baltimore, MD. Point of Contact: Laurie Bruch Phone: 410-464-6555 x38035 Email: abruch1@jhmi.edu. GENERAL UNIVERSITY OF MICHIGAN MEDICAL CENTER : VHL ALLIANCE University of Michigan Medical Center VHL Comprehensive Clinical Care Center Ann Arbor, MI. Point of Contact: Jenae Osborne, MS, CGC Phone: 734-647-0822 Email: jenaej@umich.edu Website. UMichigan Patient Resource Guide (pdf download)MAYO CLINIC
Mayo Clinic – Scottsdale VHL Clinical Care Center Phoenix, AZ. Point of Contact: Amy Burgoon Phone: 480-342-6263 Email: burgoon.amy@mayo.edu Website. Mayo Scottsdale Patient Resource Guide(pdf download)
CLEVELAND CLINIC : VHL ALLIANCE Cleveland Clinic VHL Comprehensive Clinical Care Center Cleveland, OH. Point of Contact: Jessica Marquard, MS, LGC Phone: 216-445-6798 Email: marquaj2@ccf.org Website. Cleveland Clinic Patient Resource Guide (pdfdownload)
INDIANA UNIVERSITY MEDICAL CENTER : VHL ALLIANCE Indiana University Medical Center. VHL Clinical Care Center. Indianapolis, IN. Point of Contact: Amy Tennant, RN, BSN. Phone: 317-962-0867. Email : atennant1@IUHealth.org. IU Patient Resource Guide (pdf download) Slides and Videos from the 2019 VHLA AnnualMeeting.
2020 GUIDELINES SURVEILLANCE OF PATIENTS WITH VON HIPPEL 2020 Guidelines Surveillance of Patients with von Hippel-Lindau Disease: NewGuidelines HOME - VHL ALLIANCEPATIENTSCLINICIANSRESEARCHERSGIVEABOUTWHAT IS VHL The VHL Alliance is a major resource for VHL diagnosis, screening and treatment. The “Professionals” section contains a wealth of information for health professionals seeking to know more about von Hippel-Lindau disease. The VHL Alliance is a leading funder of VHL research with over $2.6 million granted to support studies designed tofind a
WHAT IS VHL? : VHL ALLIANCESEE MORE ON VHL.ORGINTRODUCTION TO VHL
WHAT IS VHL? • von Hippel-Lindau (VHL) disease is a hereditary cancer syndrome that increases one’s risk for several types of tumors • Features of the condition can occur in childhood, adolescence or adulthood INTERNATIONAL MEDICAL/RESEARCH SYMPOSIUM : VHL ALLIANCE The International VHL Medical/Research Symposium, Amsterdam (Virtual), Netherlands, 29/10/2020-31/10/2020 has been accredited by the European Accreditation Council for Continuing Medical Education (EACCME ®) with 12 European CME credits (ECMEC®s). Each medical specialist should claim only those hours of credit that he/she actually spent in THE JOHNS HOPKINS HOSPITAL : VHL ALLIANCE The Johns Hopkins Hospital VHL Clinical Care Center Baltimore, MD. Point of Contact: Laurie Bruch Phone: 410-464-6555 x38035 Email: abruch1@jhmi.edu. GENERAL UNIVERSITY OF MICHIGAN MEDICAL CENTER : VHL ALLIANCE University of Michigan Medical Center VHL Comprehensive Clinical Care Center Ann Arbor, MI. Point of Contact: Jenae Osborne, MS, CGC Phone: 734-647-0822 Email: jenaej@umich.edu Website. UMichigan Patient Resource Guide (pdf download)MAYO CLINIC
Mayo Clinic – Scottsdale VHL Clinical Care Center Phoenix, AZ. Point of Contact: Amy Burgoon Phone: 480-342-6263 Email: burgoon.amy@mayo.edu Website. Mayo Scottsdale Patient Resource Guide(pdf download)
CLEVELAND CLINIC : VHL ALLIANCE Cleveland Clinic VHL Comprehensive Clinical Care Center Cleveland, OH. Point of Contact: Jessica Marquard, MS, LGC Phone: 216-445-6798 Email: marquaj2@ccf.org Website. Cleveland Clinic Patient Resource Guide (pdfdownload)
INDIANA UNIVERSITY MEDICAL CENTER : VHL ALLIANCE Indiana University Medical Center. VHL Clinical Care Center. Indianapolis, IN. Point of Contact: Amy Tennant, RN, BSN. Phone: 317-962-0867. Email : atennant1@IUHealth.org. IU Patient Resource Guide (pdf download) Slides and Videos from the 2019 VHLA AnnualMeeting.
2020 GUIDELINES SURVEILLANCE OF PATIENTS WITH VON HIPPEL 2020 Guidelines Surveillance of Patients with von Hippel-Lindau Disease: NewGuidelines 2021 MYVHL DAY CELEBRATION : VHL ALLIANCE My journey as a #VHLWarrior began when I was 4 years old. Last modified: June 2, 2021 Donate; Contact; Store; Press Room; NewsletterSign Up
TREATMENT CONSIDERATIONS : VHL ALLIANCE VHL disease is different in every person, so there are no universal treatment recommendations. Appropriate treatment options can only be determined by careful evaluation of each person’s unique situation including symptoms, test results, imaging studies, and MAKING A DIAGNOSIS : VHL ALLIANCE The VHL Handbook goes into great detail about VHL manifestations, treatments, and holistic care. Also available are the VHL101 videos in which VHL experts talk about treating and managing VHL. Even though a VHL patient may have a whole team of specialists, a primary care provider is essential. The VHL Alliance also encourages all PCPs ofVHL
INTERNATIONAL CLINICAL CARE CENTERS : VHL ALLIANCE The VHL Alliance with the cooperation of local affiliate organizations has established VHL Clinical Care Centers outside of the US. In some cases, the individual country decides which medical center will be designated to treat VHL. INTERNATIONAL MEDICAL/RESEARCH SYMPOSIUM : VHL ALLIANCE Thank you for attending the 14th International Medical/Research Symposium! The meeting summary and slides will be available shortly. We hope you will join us at the next Symposium: November 3-5, 2022 in Toronto, Canada! The recorded sessions will be VHLA RESEARCH GRANT PROGRAM : VHL ALLIANCE VHLA Research Grant Program. The VHLA’s Competitive Research Grant program awards two types of Grants: Pilot Grants ($25,000 for one year), designed to help researchers prepare the basic modelling required to then pursue larger grants; and Research Grants ($150,000 over three years), designed to obtain sufficient data to apply forgovernment
ACTIVE SURVEILLANCE : VHL ALLIANCE Active Surveillance. Active surveillance is important for anyone living with a chronic disease. However, it is even more important for people living with VHL disease, given the unpredictability of the condition. Early detection, active surveillance and appropriate treatment can greatly reduce the most harmful consequences of thisgene mutation.
CLEVELAND CLINIC : VHL ALLIANCE Cleveland Clinic VHL Comprehensive Clinical Care Center Cleveland, OH. Point of Contact: Jessica Marquard, MS, LGC Phone: 216-445-6798 Email: marquaj2@ccf.org Website. Cleveland Clinic Patient Resource Guide (pdfdownload)
PANCREATIC CYSTS/TUMORS/CANCER : VHL ALLIANCE Pancreatic tumors are found in up to 17% of people with VHL. Serous microcystic adenomas are the most common. They are benign and appear as honeycombed clusters of small cysts that look solid on the scans. These generally do not need to be removed, unless they are causing obstructions to the normal flow of fluids and enzymes that cannot be PHEOCHROMOCYTOMA, PARAGANGLIOMAS : VHL ALLIANCE Pheochromocytoma, Paragangliomas. VHL is associated with a usually benign type of tumor occurring in the adrenal glands, called a pheochromocytoma (pheo). Pheos occur more frequently in some families than others. They are rarely malignant (less than HOME - VHL ALLIANCEPATIENTSCLINICIANSRESEARCHERSGIVEABOUTWHAT IS VHL The VHL Alliance is a major resource for VHL diagnosis, screening and treatment. The “Professionals” section contains a wealth of information for health professionals seeking to know more about von Hippel-Lindau disease. The VHL Alliance is a leading funder of VHL research with over $2.6 million granted to support studies designed tofind a
WHAT IS VHL? : VHL ALLIANCESEE MORE ON VHL.ORGWHAT IS VHL CANCERINTRODUCTION TO VHL
WHAT IS VHL? • von Hippel-Lindau (VHL) disease is a hereditary cancer syndrome that increases one’s risk for several types of tumors • Features of the condition can occur in childhood, adolescence or adulthood INTERNATIONAL MEDICAL/RESEARCH SYMPOSIUM : VHL ALLIANCE The International VHL Medical/Research Symposium, Amsterdam (Virtual), Netherlands, 29/10/2020-31/10/2020 has been accredited by the European Accreditation Council for Continuing Medical Education (EACCME ®) with 12 European CME credits (ECMEC®s). Each medical specialist should claim only those hours of credit that he/she actually spent in THE JOHNS HOPKINS HOSPITAL : VHL ALLIANCE The Johns Hopkins Hospital VHL Clinical Care Center Baltimore, MD. Point of Contact: Laurie Bruch Phone: 410-464-6555 x38035 Email: abruch1@jhmi.edu. GENERAL UNIVERSITY OF MICHIGAN MEDICAL CENTER : VHL ALLIANCEVHL DISEASEVHL CLEVERVHL TUMORSHYKDI VHLVHL GENE University of Michigan Medical Center VHL Comprehensive Clinical Care Center Ann Arbor, MI. Point of Contact: Jenae Osborne, MS, CGC Phone: 734-647-0822 Email: jenaej@umich.edu Website. UMichigan Patient Resource Guide (pdf download)MAYO CLINIC
Mayo Clinic – Scottsdale VHL Clinical Care Center Phoenix, AZ. Point of Contact: Amy Burgoon Phone: 480-342-6263 Email: burgoon.amy@mayo.edu Website. Mayo Scottsdale Patient Resource Guide(pdf download)
CLEVELAND CLINIC : VHL ALLIANCECLEVELAND CLINIC CUSTOMER SERVICECLEVELAND CLINIC MEDICAL RECORDS FAXCLEVELAND CLINIC WESTON MEDICAL RECORDSCLEVELAND CLINIC INFORMATION PHONE NUMBERCLEVELAND CLINIC PHONE NUMBER 800DOES CLEVELAND CLINIC ACCEPT MEDICARE Cleveland Clinic VHL Comprehensive Clinical Care Center Cleveland, OH. Point of Contact: Jessica Marquard, MS, LGC Phone: 216-445-6798 Email: marquaj2@ccf.org Website. Cleveland Clinic Patient Resource Guide (pdfdownload)
INDIANA UNIVERSITY MEDICAL CENTER : VHL ALLIANCEVHL ALLIANCE GUIDELINESVHL ONLINEVHL DISEASEVHL GENEVHL ALLIANCE DISEASEVHL HOME Indiana University Medical Center. VHL Clinical Care Center. Indianapolis, IN. Point of Contact: Amy Tennant, RN, BSN. Phone: 317-962-0867. Email : atennant1@IUHealth.org. IU Patient Resource Guide (pdf download) Slides and Videos from the 2019 VHLA AnnualMeeting.
2020 GUIDELINES SURVEILLANCE OF PATIENTS WITH VON HIPPEL 2020 Guidelines Surveillance of Patients with von Hippel-Lindau Disease: NewGuidelines HOME - VHL ALLIANCEPATIENTSCLINICIANSRESEARCHERSGIVEABOUTWHAT IS VHL The VHL Alliance is a major resource for VHL diagnosis, screening and treatment. The “Professionals” section contains a wealth of information for health professionals seeking to know more about von Hippel-Lindau disease. The VHL Alliance is a leading funder of VHL research with over $2.6 million granted to support studies designed tofind a
WHAT IS VHL? : VHL ALLIANCESEE MORE ON VHL.ORGWHAT IS VHL CANCERINTRODUCTION TO VHL
WHAT IS VHL? • von Hippel-Lindau (VHL) disease is a hereditary cancer syndrome that increases one’s risk for several types of tumors • Features of the condition can occur in childhood, adolescence or adulthood INTERNATIONAL MEDICAL/RESEARCH SYMPOSIUM : VHL ALLIANCE The International VHL Medical/Research Symposium, Amsterdam (Virtual), Netherlands, 29/10/2020-31/10/2020 has been accredited by the European Accreditation Council for Continuing Medical Education (EACCME ®) with 12 European CME credits (ECMEC®s). Each medical specialist should claim only those hours of credit that he/she actually spent in THE JOHNS HOPKINS HOSPITAL : VHL ALLIANCE The Johns Hopkins Hospital VHL Clinical Care Center Baltimore, MD. Point of Contact: Laurie Bruch Phone: 410-464-6555 x38035 Email: abruch1@jhmi.edu. GENERAL UNIVERSITY OF MICHIGAN MEDICAL CENTER : VHL ALLIANCEVHL DISEASEVHL CLEVERVHL TUMORSHYKDI VHLVHL GENE University of Michigan Medical Center VHL Comprehensive Clinical Care Center Ann Arbor, MI. Point of Contact: Jenae Osborne, MS, CGC Phone: 734-647-0822 Email: jenaej@umich.edu Website. UMichigan Patient Resource Guide (pdf download)MAYO CLINIC
Mayo Clinic – Scottsdale VHL Clinical Care Center Phoenix, AZ. Point of Contact: Amy Burgoon Phone: 480-342-6263 Email: burgoon.amy@mayo.edu Website. Mayo Scottsdale Patient Resource Guide(pdf download)
CLEVELAND CLINIC : VHL ALLIANCECLEVELAND CLINIC CUSTOMER SERVICECLEVELAND CLINIC MEDICAL RECORDS FAXCLEVELAND CLINIC WESTON MEDICAL RECORDSCLEVELAND CLINIC INFORMATION PHONE NUMBERCLEVELAND CLINIC PHONE NUMBER 800DOES CLEVELAND CLINIC ACCEPT MEDICARE Cleveland Clinic VHL Comprehensive Clinical Care Center Cleveland, OH. Point of Contact: Jessica Marquard, MS, LGC Phone: 216-445-6798 Email: marquaj2@ccf.org Website. Cleveland Clinic Patient Resource Guide (pdfdownload)
INDIANA UNIVERSITY MEDICAL CENTER : VHL ALLIANCEVHL ALLIANCE GUIDELINESVHL ONLINEVHL DISEASEVHL GENEVHL ALLIANCE DISEASEVHL HOME Indiana University Medical Center. VHL Clinical Care Center. Indianapolis, IN. Point of Contact: Amy Tennant, RN, BSN. Phone: 317-962-0867. Email : atennant1@IUHealth.org. IU Patient Resource Guide (pdf download) Slides and Videos from the 2019 VHLA AnnualMeeting.
2020 GUIDELINES SURVEILLANCE OF PATIENTS WITH VON HIPPEL 2020 Guidelines Surveillance of Patients with von Hippel-Lindau Disease: NewGuidelines 2021 MYVHL DAY CELEBRATION : VHL ALLIANCE My journey as a #VHLWarrior began when I was 4 years old. Last modified: June 2, 2021 Donate; Contact; Store; Press Room; NewsletterSign Up
TREATMENT CONSIDERATIONS : VHL ALLIANCE VHL disease is different in every person, so there are no universal treatment recommendations. Appropriate treatment options can only be determined by careful evaluation of each person’s unique situation including symptoms, test results, imaging studies, and MAKING A DIAGNOSIS : VHL ALLIANCE The VHL Handbook goes into great detail about VHL manifestations, treatments, and holistic care. Also available are the VHL101 videos in which VHL experts talk about treating and managing VHL. Even though a VHL patient may have a whole team of specialists, a primary care provider is essential. The VHL Alliance also encourages all PCPs ofVHL
INTERNATIONAL CLINICAL CARE CENTERS : VHL ALLIANCE The VHL Alliance with the cooperation of local affiliate organizations has established VHL Clinical Care Centers outside of the US. In some cases, the individual country decides which medical center will be designated to treat VHL. INTERNATIONAL MEDICAL/RESEARCH SYMPOSIUM : VHL ALLIANCE Thank you for attending the 14th International Medical/Research Symposium! The meeting summary and slides will be available shortly. We hope you will join us at the next Symposium: November 3-5, 2022 in Toronto, Canada! The recorded sessions will be VHLA RESEARCH GRANT PROGRAM : VHL ALLIANCE VHLA Research Grant Program. The VHLA’s Competitive Research Grant program awards two types of Grants: Pilot Grants ($25,000 for one year), designed to help researchers prepare the basic modelling required to then pursue larger grants; and Research Grants ($150,000 over three years), designed to obtain sufficient data to apply forgovernment
ACTIVE SURVEILLANCE : VHL ALLIANCE Active Surveillance. Active surveillance is important for anyone living with a chronic disease. However, it is even more important for people living with VHL disease, given the unpredictability of the condition. Early detection, active surveillance and appropriate treatment can greatly reduce the most harmful consequences of thisgene mutation.
CLEVELAND CLINIC : VHL ALLIANCE Cleveland Clinic VHL Comprehensive Clinical Care Center Cleveland, OH. Point of Contact: Jessica Marquard, MS, LGC Phone: 216-445-6798 Email: marquaj2@ccf.org Website. Cleveland Clinic Patient Resource Guide (pdfdownload)
PANCREATIC CYSTS/TUMORS/CANCER : VHL ALLIANCE Pancreatic tumors are found in up to 17% of people with VHL. Serous microcystic adenomas are the most common. They are benign and appear as honeycombed clusters of small cysts that look solid on the scans. These generally do not need to be removed, unless they are causing obstructions to the normal flow of fluids and enzymes that cannot be PHEOCHROMOCYTOMA, PARAGANGLIOMAS : VHL ALLIANCE Pheochromocytoma, Paragangliomas. VHL is associated with a usually benign type of tumor occurring in the adrenal glands, called a pheochromocytoma (pheo). Pheos occur more frequently in some families than others. They are rarely malignant (less than HOME - VHL ALLIANCEPATIENTSCLINICIANSRESEARCHERSGIVEABOUTWHAT IS VHL The VHL Alliance is a major resource for VHL diagnosis, screening and treatment. The “Professionals” section contains a wealth of information for health professionals seeking to know more about von Hippel-Lindau disease. The VHL Alliance is a leading funder of VHL research with over $2.6 million granted to support studies designed tofind a
WHAT IS VHL? : VHL ALLIANCESEE MORE ON VHL.ORGWHAT IS VHL CANCERINTRODUCTION TO VHL
WHAT IS VHL? • von Hippel-Lindau (VHL) disease is a hereditary cancer syndrome that increases one’s risk for several types of tumors • Features of the condition can occur in childhood, adolescence or adulthood INTERNATIONAL MEDICAL/RESEARCH SYMPOSIUM : VHL ALLIANCE The International VHL Medical/Research Symposium, Amsterdam (Virtual), Netherlands, 29/10/2020-31/10/2020 has been accredited by the European Accreditation Council for Continuing Medical Education (EACCME ®) with 12 European CME credits (ECMEC®s). Each medical specialist should claim only those hours of credit that he/she actually spent in THE JOHNS HOPKINS HOSPITAL : VHL ALLIANCE The Johns Hopkins Hospital VHL Clinical Care Center Baltimore, MD. Point of Contact: Laurie Bruch Phone: 410-464-6555 x38035 Email: abruch1@jhmi.edu. GENERAL UNIVERSITY OF MICHIGAN MEDICAL CENTER : VHL ALLIANCEVHL DISEASEVHL CLEVERVHL TUMORSHYKDI VHLVHL GENE University of Michigan Medical Center VHL Comprehensive Clinical Care Center Ann Arbor, MI. Point of Contact: Jenae Osborne, MS, CGC Phone: 734-647-0822 Email: jenaej@umich.edu Website. UMichigan Patient Resource Guide (pdf download)MAYO CLINIC
Mayo Clinic – Scottsdale VHL Clinical Care Center Phoenix, AZ. Point of Contact: Amy Burgoon Phone: 480-342-6263 Email: burgoon.amy@mayo.edu Website. Mayo Scottsdale Patient Resource Guide(pdf download)
CLEVELAND CLINIC : VHL ALLIANCECLEVELAND CLINIC CUSTOMER SERVICECLEVELAND CLINIC MEDICAL RECORDS FAXCLEVELAND CLINIC WESTON MEDICAL RECORDSCLEVELAND CLINIC INFORMATION PHONE NUMBERCLEVELAND CLINIC PHONE NUMBER 800DOES CLEVELAND CLINIC ACCEPT MEDICARE Cleveland Clinic VHL Comprehensive Clinical Care Center Cleveland, OH. Point of Contact: Jessica Marquard, MS, LGC Phone: 216-445-6798 Email: marquaj2@ccf.org Website. Cleveland Clinic Patient Resource Guide (pdfdownload)
INDIANA UNIVERSITY MEDICAL CENTER : VHL ALLIANCEVHL ALLIANCE GUIDELINESVHL ONLINEVHL DISEASEVHL GENEVHL ALLIANCE DISEASEVHL HOME Indiana University Medical Center. VHL Clinical Care Center. Indianapolis, IN. Point of Contact: Amy Tennant, RN, BSN. Phone: 317-962-0867. Email : atennant1@IUHealth.org. IU Patient Resource Guide (pdf download) Slides and Videos from the 2019 VHLA AnnualMeeting.
2020 GUIDELINES SURVEILLANCE OF PATIENTS WITH VON HIPPEL 2020 Guidelines Surveillance of Patients with von Hippel-Lindau Disease: NewGuidelines HOME - VHL ALLIANCEPATIENTSCLINICIANSRESEARCHERSGIVEABOUTWHAT IS VHL The VHL Alliance is a major resource for VHL diagnosis, screening and treatment. The “Professionals” section contains a wealth of information for health professionals seeking to know more about von Hippel-Lindau disease. The VHL Alliance is a leading funder of VHL research with over $2.6 million granted to support studies designed tofind a
WHAT IS VHL? : VHL ALLIANCESEE MORE ON VHL.ORGWHAT IS VHL CANCERINTRODUCTION TO VHL
WHAT IS VHL? • von Hippel-Lindau (VHL) disease is a hereditary cancer syndrome that increases one’s risk for several types of tumors • Features of the condition can occur in childhood, adolescence or adulthood INTERNATIONAL MEDICAL/RESEARCH SYMPOSIUM : VHL ALLIANCE The International VHL Medical/Research Symposium, Amsterdam (Virtual), Netherlands, 29/10/2020-31/10/2020 has been accredited by the European Accreditation Council for Continuing Medical Education (EACCME ®) with 12 European CME credits (ECMEC®s). Each medical specialist should claim only those hours of credit that he/she actually spent in THE JOHNS HOPKINS HOSPITAL : VHL ALLIANCE The Johns Hopkins Hospital VHL Clinical Care Center Baltimore, MD. Point of Contact: Laurie Bruch Phone: 410-464-6555 x38035 Email: abruch1@jhmi.edu. GENERAL UNIVERSITY OF MICHIGAN MEDICAL CENTER : VHL ALLIANCEVHL DISEASEVHL CLEVERVHL TUMORSHYKDI VHLVHL GENE University of Michigan Medical Center VHL Comprehensive Clinical Care Center Ann Arbor, MI. Point of Contact: Jenae Osborne, MS, CGC Phone: 734-647-0822 Email: jenaej@umich.edu Website. UMichigan Patient Resource Guide (pdf download)MAYO CLINIC
Mayo Clinic – Scottsdale VHL Clinical Care Center Phoenix, AZ. Point of Contact: Amy Burgoon Phone: 480-342-6263 Email: burgoon.amy@mayo.edu Website. Mayo Scottsdale Patient Resource Guide(pdf download)
CLEVELAND CLINIC : VHL ALLIANCECLEVELAND CLINIC CUSTOMER SERVICECLEVELAND CLINIC MEDICAL RECORDS FAXCLEVELAND CLINIC WESTON MEDICAL RECORDSCLEVELAND CLINIC INFORMATION PHONE NUMBERCLEVELAND CLINIC PHONE NUMBER 800DOES CLEVELAND CLINIC ACCEPT MEDICARE Cleveland Clinic VHL Comprehensive Clinical Care Center Cleveland, OH. Point of Contact: Jessica Marquard, MS, LGC Phone: 216-445-6798 Email: marquaj2@ccf.org Website. Cleveland Clinic Patient Resource Guide (pdfdownload)
INDIANA UNIVERSITY MEDICAL CENTER : VHL ALLIANCEVHL ALLIANCE GUIDELINESVHL ONLINEVHL DISEASEVHL GENEVHL ALLIANCE DISEASEVHL HOME Indiana University Medical Center. VHL Clinical Care Center. Indianapolis, IN. Point of Contact: Amy Tennant, RN, BSN. Phone: 317-962-0867. Email : atennant1@IUHealth.org. IU Patient Resource Guide (pdf download) Slides and Videos from the 2019 VHLA AnnualMeeting.
2020 GUIDELINES SURVEILLANCE OF PATIENTS WITH VON HIPPEL 2020 Guidelines Surveillance of Patients with von Hippel-Lindau Disease: NewGuidelines 2021 MYVHL DAY CELEBRATION : VHL ALLIANCE My journey as a #VHLWarrior began when I was 4 years old. Last modified: June 2, 2021 Donate; Contact; Store; Press Room; NewsletterSign Up
TREATMENT CONSIDERATIONS : VHL ALLIANCE VHL disease is different in every person, so there are no universal treatment recommendations. Appropriate treatment options can only be determined by careful evaluation of each person’s unique situation including symptoms, test results, imaging studies, and MAKING A DIAGNOSIS : VHL ALLIANCE The VHL Handbook goes into great detail about VHL manifestations, treatments, and holistic care. Also available are the VHL101 videos in which VHL experts talk about treating and managing VHL. Even though a VHL patient may have a whole team of specialists, a primary care provider is essential. The VHL Alliance also encourages all PCPs ofVHL
INTERNATIONAL CLINICAL CARE CENTERS : VHL ALLIANCE The VHL Alliance with the cooperation of local affiliate organizations has established VHL Clinical Care Centers outside of the US. In some cases, the individual country decides which medical center will be designated to treat VHL. INTERNATIONAL MEDICAL/RESEARCH SYMPOSIUM : VHL ALLIANCE Thank you for attending the 14th International Medical/Research Symposium! The meeting summary and slides will be available shortly. We hope you will join us at the next Symposium: November 3-5, 2022 in Toronto, Canada! The recorded sessions will be VHLA RESEARCH GRANT PROGRAM : VHL ALLIANCE VHLA Research Grant Program. The VHLA’s Competitive Research Grant program awards two types of Grants: Pilot Grants ($25,000 for one year), designed to help researchers prepare the basic modelling required to then pursue larger grants; and Research Grants ($150,000 over three years), designed to obtain sufficient data to apply forgovernment
ACTIVE SURVEILLANCE : VHL ALLIANCE Active Surveillance. Active surveillance is important for anyone living with a chronic disease. However, it is even more important for people living with VHL disease, given the unpredictability of the condition. Early detection, active surveillance and appropriate treatment can greatly reduce the most harmful consequences of thisgene mutation.
CLEVELAND CLINIC : VHL ALLIANCE Cleveland Clinic VHL Comprehensive Clinical Care Center Cleveland, OH. Point of Contact: Jessica Marquard, MS, LGC Phone: 216-445-6798 Email: marquaj2@ccf.org Website. Cleveland Clinic Patient Resource Guide (pdfdownload)
PANCREATIC CYSTS/TUMORS/CANCER : VHL ALLIANCE Pancreatic tumors are found in up to 17% of people with VHL. Serous microcystic adenomas are the most common. They are benign and appear as honeycombed clusters of small cysts that look solid on the scans. These generally do not need to be removed, unless they are causing obstructions to the normal flow of fluids and enzymes that cannot be PHEOCHROMOCYTOMA, PARAGANGLIOMAS : VHL ALLIANCE Pheochromocytoma, Paragangliomas. VHL is associated with a usually benign type of tumor occurring in the adrenal glands, called a pheochromocytoma (pheo). Pheos occur more frequently in some families than others. They are rarely malignant (less thanvhl alliance
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I want to help.
It is only through the generosity of our supporters and our volunteers that we can offer so many different programs. We are asking you to join us and continue your support.get involved »
Curing Cancer through VHL “On behalf of the von Hippel-Lindau (VHL) community, and the dozens of von Hippel-Lindau patients who were enrolled in the MK-6482 Phase 2 trial, we cannot begin to express the hope and excitement that this drug may mean to patients who currently have no therapeutic optionsavailable.”
Dr. Ilene Sussman
VHLA Executive Director Read the Full Statement »The VHL Alliance
is dedicated to research, education, and support to improve awareness, diagnosis, treatment, and quality of life for those affected by VHL. learn more about our vision and mission »What is VHL?
Von Hippel-Lindau (VHL) is a genetic condition involving the abnormal growth of blood vessels in up to 10 parts of the body. It is caused by a flaw in one gene, the VHL gene, which regulates cell growth causing patients to battle a series of tumors throughout their life.learn more »
I have VHL. What can I do? See the many activities and opportunities for learning and connecting with others dealing with VHL, whether they be patients, family members, caregivers, or friends.patients section »
Resources for Professionals The VHL Alliance is a major resource for VHL diagnosis, screening and treatment. The “Professionals” section contains a wealth of information for health professionals seeking to know more about von Hippel-Lindau disease. professionals section »Research
The VHL Alliance is a leading funder of VHL research with over $2.3 million granted to support studies designed to find a cure. While these funds have not yet uncovered an effective pharmacological treatment for VHL, the supported research has resulted in approval of multiple cancer drugs for other cancers including kidney and breastcancers.
research section »
I want to help.
It is only through the generosity of our supporters and our volunteers that we can offer so many different programs. We are asking you to join us and continue your support.get involved »
Curing Cancer through VHL “On behalf of the von Hippel-Lindau (VHL) community, and the dozens of von Hippel-Lindau patients who were enrolled in the MK-6482 Phase 2 trial, we cannot begin to express the hope and excitement that this drug may mean to patients who currently have no therapeutic optionsavailable.”
Dr. Ilene Sussman
VHLA Executive Director Read the Full Statement »* 1
* 2
* 3
* 4
* 5
* 6
* 7
Curing Cancer through VHL “On behalf of the von Hippel-Lindau (VHL) community, and the dozens of von Hippel-Lindau patients who were enrolled in the MK-6482 Phase 2 trial, we cannot begin to express the hope and excitement that this drug may mean to patients who currently have no therapeutic optionsavailable.”
Dr. Ilene Sussman
VHLA Executive DirectorThe VHL Alliance
is dedicated to research, education, and support to improve awareness, diagnosis, treatment, and quality of life for those affected by VHL.What is VHL?
Von Hippel-Lindau (VHL) is a genetic condition involving the abnormal growth of blood vessels in up to 10 parts of the body. It is caused by a flaw in one gene, the VHL gene, which regulates cell growth causing patients to battle a series of tumors throughout their life. I have VHL. What can I do? See the many activities and opportunities for learning and connecting with others dealing with VHL, whether they be patients, family members, caregivers, or friends. Resources for Professionals The VHL Alliance is a major resource for VHL diagnosis, screening and treatment. The “Professionals” section contains a wealth of information for health professionals seeking to know more about von Hippel-Lindau disease.Research
The VHL Alliance is a leading funder of VHL research with over $2.3 million granted to support studies designed to find a cure. While these funds have not yet uncovered an effective pharmacological treatment for VHL, the supported research has resulted in approval of multiple cancer drugs for other cancers including kidney and breastcancers.
I want to help.
It is only through the generosity of our supporters and our volunteers that we can offer so many different programs. We are asking you to join us and continue your support. Coronavirus (COVID-19) Updateread more Coronavirus (COVID-19) Update The VHLA Staff remain committed to supporting the VHL community in anyway we can.
Surviving and Thriving Togetherread more Surviving and Thriving Together A calendar of virtual events and gatherings to enable us to SURVIVE and THRIVE together. MK-6482 (PT-2977) Trial Resultsread more MK-6482 (PT-2977) Trial Results Von Hippel-Lindau Alliance Statement Upcoming VHL Eventssee all News & Events05.01.2020
VHL Awareness Month Events05.31.2020
Cocktails Against Cancer06.01.2020
Patient/Caregiver Monthly Call06.10.2020
Low/No Vision Monthly Call*
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