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 KnaapChidren and VWM..
Elroy-Stein Lab – Professor Orna Elroy-SteinElroyStein..
The Vanishing White Matter FoundationVWM Foundation..
Genetics Home Reference – U.S. National Library of MedicineLibrary of Medicine - VWM..
The Myelin ProjectMyelin Project..
Australian Leukodystrophy Support GroupALDS Website..
United Leukodystrophy FoundationFoundation Website..
European Leukodystrophies AssociationELA Website..
Orphanet – the portal for rare diseases and orphan drugsOrpha Website..
Comfy Caps (Chloe’s special soft cap she wears)Comfy Caps Website..
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)