VHL Family Alliance

From WikiGenetics
Jump to: navigation, search

VHL.jpg

Contents

Background

The VHL Family Alliance was founded in 1993 by three wives of people with von Hippel-Lindau disease. The organization created a handbook, now in its 3rd edition, that has dramatically affected the manageability of VHL by giving patients and their local doctors, the information they need to monitor the disease. In the last year alone the VHL Family Alliance has established a relationship with National Disease Research Interchange (NDRI), which has broadened its research biobank and improved its ability to foster research. The VHL Family Alliance is located in Boston, Massachusetts.

Website

http://www.vhl.org

Recommended Sites

Links to Other Organizations

   * Advocacy Organizations
   * Academic Institutions
   * Biotech Companies
   * Government Agencies
   * Genetic Alliance
   * Laboratories
   * Law/Consulting Firm
   * Patient Registries
   * Policy Organizations/Think Tanks
   * Professional Societies
   * Other
Personal tools