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VHL Awareness Month

May 2018 Thursday, May 3 through Friday, May 4th Online LuLaRoe Clothing Sale benefiting VHL Alliance visit the link below ...
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/ Events, Meetings

Be Part of Finding a New Treatment

MD Anderson Cancer Center is the first of a multicenter clinical trial for PT2977 (Peloton) to open. PT2977 is a ...
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/ News, Uncategorized

VHL Mobile App Challenge Winner Announced

Download from iTunes A modern and user-friendly app that provides a quick and easy way for anyone affected by VHL to ...
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/ News, Press Releases

13th International VHL Medical/Research Symposium

AGENDA The University of Texas MD Anderson, Houston, TX October 4-6, 2018 17.50 AMA PRA Category 1 Credits™ Course Directors: ...
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/ Doctors, Events, Meetings, Symposia

Elsevier Partners with VHL Alliance on Practice Update

Elsevier, a world-leading provider of scientific, technical, and medical information products and services, recently announced that it is partnering with ...
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/ News

Team VHL in British Columbia, 2018

Team VHL is excited to be participating in the 2018 Victoria, BC Marathon on October 7, 2018!  We hope that all runners ...
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/ Events, Volunteers

2018 Annual Young Adult Retreat

Are you a young adult with VHL between the ages of 18 and 30?  If so, join other young adults ...
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/ Events, Meetings

2018 Annual Family Weekend

Join us for the 2018 Family Annual Weekend in Denver, CO. Click here to view Family Meeting Agenda. Book your ...
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/ Events, Meetings

Moffitt Cancer Center to Partner with VHL Alliance on 2017 Family Weekend

Patients, families, and caregivers welcome to participate in weekend events TAMPA, Fla. (Oct. 11, 2017) — Moffitt Cancer Center is ...
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/ Press Releases

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

Patient/Caregiver Monthly Discussion Group

May Patient/Caregiver Telephone Discussion Group TOPIC:  Resilience Please join us on Monday, May 7th to discuss resilience and what we can ...
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/ Events, Meetings

Parents of VHLers Discussion Group

May Parents of VHLers Telephone Discussion Group TOPIC:  Self Care Parents of children with VHL face endless physical, emotional, and spiritual ...
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/ Events, Meetings

Low/No Vision Monthly Discussion Group

May Low/No Vision Telephone Discussion Group TOPIC:  Travelling Living with low or no vision creates unique challenges for VHLers. The Low/No Vision ...
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/ Events, Meetings

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
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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