vhl alliance

News & Events

All / Events / Meetings / Volunteers / Patients in the Press / News / VHL In the Press Press Releases / Uncategorized


13th International VHL Medical/Research Symposium

13th International VHL Medical/Research Symposium The University of Texas MD Anderson, Houston, TX October 4-6, 2018 Course Directors: W. Kimryn ...
Read More
/ 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 ...
Read More
/ 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 ...
Read More
/ 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 ...
Read More
/ 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 ...
Read More
/ 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 ...
Read More
/ 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 ...
Read More
/ News, VHL in the Press

Patient/Caregiver Monthly Discussion Group

February Patient/Caregiver Telephone Discussion Group TOPIC:  Educating the Professionals Please join us on Monday, February 5th to discuss how patients ...
Read More
/ Events, Meetings

Parents of VHLers Discussion Group

March Parents of VHLers Telephone Discussion Group TOPIC:  Dealing with a Diagnosis Parents of children with VHL face endless physical, emotional, ...
Read More
/ Events, Meetings

Low/No Vision Monthly Discussion Group

February Low/No Vision Telephone Discussion Group TOPIC:  Weather and How it Affects Us Living with low or no vision creates unique challenges ...
Read More
/ 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 ...
Read More
/ 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 ...
Read More
/ 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, ...
Read More
/ 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 ...
Read More
/ 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 ...
Read More
/ 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 ...
Read More
/ 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 ...
Read More
/ 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, ...
Read More
/ 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 ...
Read More
/ News, Patients in Press