Other information sources for patients and families of patients with neurogenetic disorders

• Links to more information on neurofibromatosis (NF-1 and NF-2)
• Links to more information on tuberous sclerosis
• Links to more information on Von Hippel-Lindau disease
• Links to other information on hydrocephalus
• Links to other resources for patient's (and families/care-givers) with brain, spine, or peripheral nerve tumors
• MGH Molecular Neurogentics Lab
• Please add additional links to the MGH Neurogenetics Clinical Homepage Guestbook

Von Hippel-Lindau Disease

• Von Hippel-Lindau Disease Family Alliance Homepage
  • VHL Family Alliance Handbook: What you Need to Know about VHL
  • VHL Family Alliance via email <vhl@PIPELINE.COM>
  • More information about VHL
    • What is Von Hippel-Lindau Disease?
    • VHL . . . Not so rare after all
    • A Coup for Cancer Research: Progress in Understanding the VHL Gene
    • Excerpts from the VHL Family Forum on the link between VHL and kidney cancer
    • DNA testing for VHL
    • The NCI VHL Classification System
• Von Hippel Lindau Disease: Genetic, Clinical and Imaging Features
• National Cancer Institute Kidney Cancer Web Page
• Galaxy.Net's VHL Links Page
• MGH neurosurgeons with expertice in hemangioblastomas
• Please add additional links to the MGH NeuroGenetic Surgery Guestbook
• Information about multidisciplinary care at MGH for people with VHL.

  MGH Molecular Neurogentics Lab:

  Mia MacCollin M.D.
  Katherine B. Sims, M.D.
  Xandra O. Breakefield, Ph.D.
  Jonathan L. Haines, Ph.D.
  Lee B. Jacoby, Ph.D.

Tuberous Sclerosis

• The National Tuberous Sclerosis Association (description and 800 number)
  • National TS Association via e-mail <ntsa@ntsa.org>
  • NTSA's Tuberous Sclerosis Homepage
• Tuberous Sclerosis Canada Sclerose Tubereuse (TSCST, description and 800 number)
  • TSCST via e-mail <jillian.dasilva@ablelink.org>
• Cody and Jordan's Page with information and links regarding TS by Eric, Cody, and Jordan Adams.
• Galaxy.Net's TS Links Page
• Tuberous Sclerosis - Bourneville's Disease with images from the U of Iowa
• Information on Tuberous Sclerosis from the (US) National Institutes of Neurological Disorders and Stroke
  • What Is Tuberous Sclerosis?
  • Research & Resources For Tuberous Sclerosis
• MGH Research efforts regarding TS
  • Molecular Neurogentics Lab: Jonathan L. Haines, Ph.D.
• Please add additional links to the MGH Neurogenetics Clinical Homepage Guestbook
• MGH neurosurgeons with special expertise in subependymal giant cell astrocytomas
• Information about multidisciplinary care at MGH for people with TS