VHL Family Alliance Newsroom - Profile and News Archive

VHL Family Alliance | Von Hippel-Lindau Disease, VHL Family Alliance, rare diseases, vhl, boston events, dinner, fundraising, Rare Disease Day, NORD, National Organization for Rare Disorders

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Press Releases from VHL Family Alliance :

Written by Parents, Drawn by the Kids, VHL Family Alliance Announces the First Guide for Kids Dealing with Hereditary Cancer Syndromes: The VHL Handbook Kids’ Edition

VHL Family Alliance

BOSTON, Mass., June 1 (SEND2PRESS NEWSWIRE) — The VHL Family Alliance (VHLFA) announced today that the very first ‘VHL Handbook Kids’ Edition’ (ISBN: 978-1-929539-02-4) is now available at Amazon.com. The book was written and reviewed by a team of parents and professionals and illustrated with charming drawings and photographs from children with VHL, their siblings and friends. (VNR – Video News Release)

VHL Family Alliance Kicks off May Awareness Month, Announcing 8 Events Coast to Coast

VHL Family Alliance

BOSTON, Mass., May 1 (SEND2PRESS NEWSWIRE) — A neoburlesque sci-fi play in Providence, a Crabfest in Maryland, a music festival on Boston Common – all to support the VHL Family Alliance (VHLFA) in its fight to get attention for its rare disease population. Thirteen year old Alex Anderson from New Jersey formed the idea of a worldwide fundraiser to benefit the VHLFA. The VHLFA announced today the beginning of a month long celebration highlighted by International VHL Day, May 9th to spread awareness for von Hippel-Lindau disease (VHL).

VHL Family Alliance Announces Free Awareness Benefit Concert in Boston Common

VHL Family Alliance

BOSTON, Mass., May 1 (SEND2PRESS NEWSWIRE) — This year VHL Family Alliance will be hosting its first annual special event in honor of International VHL Day, which will be declared in Massachusetts in May at the State House. Alex Anderson, a 13 year old boy from New Jersey, started this concept when he had a vision of hosting a worldwide fundraiser for VHL. Alex has already had a tumor in his ear at age four and four tumors in his retina, all resulting from his struggle with VHL.

VHL Family Alliance Announced Partner in Rare Disease Day

Good Gets Better Publishing

BOSTON, Mass., Feb. 5 (SEND2PRESS NEWSWIRE) — The National Organization for Rare Disorders (NORD) is coordinating the observance of Rare Disease Day in the United States on February 28, 2009. VHL Family Alliance announced today that on that day, and in the weeks leading up to it, they will join with others around the world in focusing on rare disease challenges and the importance of research in developing diagnostics and treatments.