A national alliance of patient organisations.
For families seeking information on inherited metabolic conditions.
Supporting families affected by a syndrome without a name.
Contact a Family
A charity providing advice, information and support for families with disabled children no matter what the condition.
Campaigning on behalf of all those affected by a rare condition.
Specialised Healthcare Alliance
A broad coalition of patient groups for rare and complex conditions.
Charity providing information and support on rare chromosomal disorders.
Genetics – NHS Choices