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Caregiver Discussion Group

September Caregiver Telephone Discussion Group TOPIC:  Facing Our Fears: Strategies for Success Caregivers face endless physical, emotional, and spiritual challenges as they ...
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/ Events, Meetings

Low/No Vision Monthly Discussion Group

September Low/No Vision Telephone Discussion Group TOPIC:  Facing Our Fears: Strategies for Success Living with low or no vision creates unique challenges ...
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/ Events, Meetings

Patient/Caregiver Monthly Discussion Group

September Patient/Caregiver Telephone Discussion Group TOPIC:  Facing Our Fears: Strategies for Success Please join us on Monday, September 11th to ...
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/ Events, Meetings
Embassy Suites Tampa

2017 Annual Family Weekend

Join us in Tampa, Florida Fundraising Dinner & Auction FRIDAY EVENING, OCTOBER 13 Honoring Steven Angotti, J.D. and The Moffitt ...
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/ Events, Meetings

YOUNG MOM HALEY MILLER BATTLES RARE DISEASE

This article will be about a brave woman who battles one of those rare afflictions, a gene mutation with a ...
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/ News, VHL in the Press
Malecon Avenue Cuba

Team VHL in Havana 2018

Team VHL is excited to be participating in the 2018 Havana Marathon!  We hope that all runners and walkers will join us in mid-November for a ...
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/ Events, Volunteers

Team VHL and the Baltimore Marathon

Team VHL Captain Suellen organized 15 runners/walkers to participate in the 2016 Baltimore Marathon. More than $40,000 was raised for ...
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/ Patients in Press

FDA Voice – Rare Diseases

The more we know about rare diseases, the more likely we are to find safe and effective treatments Posted on ...
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/ News

A Pivotal Moment for the Treatment of Rare Diseases

Speech by Margaret A. Hamburg, MD Commissioner of Food and Drugs NORD Rare Diseases and Orphan Products Breakthrough Summit Alexandria, ...
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/ News
Biocentury logo

Biocentury Article on VHL Patient Databank

A databank constructed by the National Organization for Rare Disorders and the VHL Alliance could serve as a model for ...
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/ News

VHL Alliance and NORD Launch New International Databank

To Support Research and Gain a Better Understanding of VHL and other Forms of Cancer, Patients and Medical Experts Around ...
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/ Press Releases

VHL Alliance Funds Harvard/Tel Aviv Universities

The von Hippel-Lindau (VHL) Alliance is pleased to award research funding to two outstanding researchers, Othon Iliopoulos, MD, Harvard Medical ...
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/ Press Releases

Tom Rath, NY Times Bestselling Author, Honors NCI Chief Dr. W. Marston Linehan at VHL Alliance Annual Fundraising Dinner in 2015

Tom Rath, NY Times bestselling author, honors NCI Chief Dr. W. Marston Linehan at VHL Alliance Annual Fundraising Dinner in ...
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/ Press Releases, VHL in the Press
Moms Day Run

Ventura run raises money for cancer research

Before Suellen Lindquist’s mother died in 2010 from complications of von Hippel-Lindau disease that also has affected several other family members, ...
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/ News, Patients in Press

Irish Dance Instructor Finds Comprehensive Care for Rare Genetic Disorder at Dedicated VHL Center

After undergoing surgery to address ovarian cysts, Ellen Waller, 31, wasn’t too concerned about the laboratory tests being performed on ...
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/ News, Patients in Press