Email discussion group for those affected by the condition.

Archive of messages, and membership form.

Email discussion list for parents to discuss their questions and concerns. [Membership required.]

Discussion group for families of children with the condition. [Membership required.]

A patient support group based in West Midlands, UK. Includes details of meetings, alongside general information.

Provides a network for those with a severe form of this condition. Includes general information. [Membership fee required to join.]