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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 leading funder of VHL research with over $2.6 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.
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 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 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) 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 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)
PANCREATIC CYSTS/TUMORS/CANCER : VHL ALLIANCE Pancreatic insufficiency is when the pancreas is not making the digestive enzymes, or when their delivery to the gut is blocked. Removal of all or part of the pancreas reduces the ability of the pancreas to make and deliver these enzymes. 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 leading funder of VHL research with over $2.6 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.
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 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 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) 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 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)
PANCREATIC CYSTS/TUMORS/CANCER : VHL ALLIANCE Pancreatic insufficiency is when the pancreas is not making the digestive enzymes, or when their delivery to the gut is blocked. Removal of all or part of the pancreas reduces the ability of the pancreas to make and deliver these enzymes. 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 HEALTHY LIFESTYLE : VHL ALLIANCE Many things, like sleep, nutrition, and exercise can be controlled. A healthy lifestyle will help improve your overall health andwell-being.
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. ACTIVE SURVEILLANCE : VHL ALLIANCE The VHL Alliance and its Clinical Advisory Council recommend that children who are at risk for VHL should have genetic testing as early as birth. A person is considered “at risk” if they have a biological parent with VHL. If someone has a positive test for VHL, they should follow the Active Surveillance Guidelines.. Early screening includes an eye/retina examination, a hearing test, blood VHLA RESEARCH GRANT PROGRAM : VHL ALLIANCE 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 for government funded resources. 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 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 Symptoms of malabsorption include diarrhea, bloating, cramping, abdominal pain, fatty stools (appear frothy and oily on the top of the toilet bowl water, with a strong odor), and possible deficiencies of fat-soluble vitamins (A, D, K, and E). PHEOCHROMOCYTOMA, PARAGANGLIOMAS : VHL ALLIANCE excerpts from VHL Handbook 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 familiesthan others.
HOME - VHL ALLIANCEPATIENTSCLINICIANSRESEARCHERSGIVEABOUTWHAT IS VHL The VHL Alliance is a leading funder of VHL research with over $2.6 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.
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 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 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) 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 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)
PANCREATIC CYSTS/TUMORS/CANCER : VHL ALLIANCE Pancreatic insufficiency is when the pancreas is not making the digestive enzymes, or when their delivery to the gut is blocked. Removal of all or part of the pancreas reduces the ability of the pancreas to make and deliver these enzymes. 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 leading funder of VHL research with over $2.6 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.
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 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 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) 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 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)
PANCREATIC CYSTS/TUMORS/CANCER : VHL ALLIANCE Pancreatic insufficiency is when the pancreas is not making the digestive enzymes, or when their delivery to the gut is blocked. Removal of all or part of the pancreas reduces the ability of the pancreas to make and deliver these enzymes. 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 HEALTHY LIFESTYLE : VHL ALLIANCE Many things, like sleep, nutrition, and exercise can be controlled. A healthy lifestyle will help improve your overall health andwell-being.
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. ACTIVE SURVEILLANCE : VHL ALLIANCE The VHL Alliance and its Clinical Advisory Council recommend that children who are at risk for VHL should have genetic testing as early as birth. A person is considered “at risk” if they have a biological parent with VHL. If someone has a positive test for VHL, they should follow the Active Surveillance Guidelines.. Early screening includes an eye/retina examination, a hearing test, blood VHLA RESEARCH GRANT PROGRAM : VHL ALLIANCE 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 for government funded resources. 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 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 Symptoms of malabsorption include diarrhea, bloating, cramping, abdominal pain, fatty stools (appear frothy and oily on the top of the toilet bowl water, with a strong odor), and possible deficiencies of fat-soluble vitamins (A, D, K, and E). PHEOCHROMOCYTOMA, PARAGANGLIOMAS : VHL ALLIANCE excerpts from VHL Handbook 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 familiesthan others.
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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 “When you are studying about von Hippel-Lindau disease you are not just studying about …. disease. … you are also now touching other diseases as well where we can use the _VHL_ gene to understand what is happening.” Dr. William Kaelin Jr. 2019 Nobel Prize Awardee for Medicine Read about Dr. Kaelin »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 “When you are studying about von Hippel-Lindau disease you are not just studying about …. disease. … you are also now touching other diseases as well where we can use the _VHL_ gene to understand what is happening.” Dr. William Kaelin Jr. 2019 Nobel Prize Awardee for Medicine Read about Dr. Kaelin »* 1
* 2
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Curing Cancer through VHL “When you are studying about von Hippel-Lindau disease you are not just studying about …. disease. … you are also now touching other diseases as well where we can use the _VHL_ gene to understand what is happening.” Dr. William Kaelin Jr. 2019 Nobel Prize Awardee for MedicineThe 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. Mom’s Day Runread moreMom’s Day Run
05.10.2020
Have you always wanted to participate in the MOM'S DAY RUN, but Ventura Beach, CA is just too far away?… Upcoming VHL Eventssee all News & Events05.01.2020
VHL Awareness Month Events05.02.2020
Coffee Against Cancer05.18.2020
Parents of VHLers Call06.01.2020
Patient/Caregiver Monthly Call*
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