Links to other Organisations, Support and Advice Groups

Genetic Alliance
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.

Rare Disease
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