The Alkaptonuria Society - Information about this genetic metabolic disorder for patients and professionals. Includes FAQ and a registration page for sufferers. 
The Williams Syndrome Foundation - Information for parents, carers, and professionals about a non-hereditary syndrome which can cause brain damage in varying degrees, combined with some physical side-effects.
PiXiE - Organisation supports sufferers of Pseudoxanthoma Elasticum (PXE). Includes information about the condition and its causes, guidance on managing it, and contact details.
Genetic Interest Group - Information about this umbrella group of organisations working together to improve services for people with genetic disorders. A notice board, education, services and links are provided.
Joubert Syndrome in the UK - Support group for families of children affected with Joubert Syndrome.
Advertisement