If I have one recommendation for anyone whose child has just been diagnosed with VWM,
it is to join the face book page: VWM/CACH Family Forum It has the best up to date information
and you are able to talk with other VWM families around the world.

VU University Medical Centre Amsterdam – Professor Marjo van der Knaap

Elroy-Stein Lab – Professor Orna Elroy-Stein

Wikipedia

Genetics Home Reference – U.S. National Library of Medicine

The Myelin Project

Australian Leukodystrophy Support Group

United Leukodystrophy Foundation

European Leukodystrophies Association

Orphanet – the portal for rare diseases and orphan drugs

Comfy Caps (Chloe’s special soft cap she wears)

Helpful Australian Websites for equipment that we have used:

- TAD - Website.. (Chloe’s toilet stand/surround)

- PME - Website.. (Chloe’s Pushchair, manual wheelchair, bath seat)

- FREEDOM MOTORS - Website.. (wheelchair conversion for car)

- Scope Access - Website.. (home modifications &s; accessibility assessment)

Interchange - Website.. (provides support for families and play sessions for children with special needs)

Catholic Care - Website.. (for children with siblings with special needs club)