These are external links to the websites of organisations that offer advice, information and services which may be useful to you....
WellChild helps sick children and their families across the UK
A 'blog' site by Fumihiko Urano - detailing current research into WS
A support group for families affected by WS (US)
Supporting families affected by genetic disorders
The only national charity that exists to support the families of disabled children whatever their condition or disability
The UK's largest provider of grants to low-income families raising disabled and seriously ill children and young people
This organisation exists to "...empower, care for and inform parents and families of children with special needs in West Sussex