Self Help Groups

Aniridia Network UK
The Aniridia Network UK is a support group for people with aniridia and their families. They have been working, as a small un-funded committee, to provide support since 2000 and therefore their services are currently select but growing. They currently provide: Support for people with aniridia...
Association for GSD
ATR-X Support Group
ATR-X - Alpha Thalassaemia with Mental Retardation on the X-Chromosome is a rare condition. The ATR-X Support Group provides the following. Telephone support. Information on the condition. Contact with other families affected by the condition.
Attia Research Trust into ALD
provides a support and information service for the sufferers of adrenoleukodystrophy, Schilder's disease and sudanophilic leukodystrophy.
AVM Support UK
AVM Support UK offers support to all who are interested or whose lives have been affected by the rare congenital defect 'arteriovenous malformation'. They also provide information and support on related conditions caused by or resulting from an arteriovenous malformation (also known as AVM). The...
Batten Disease Family Association
The principal aim of the Batten Disease Family Association (BDFA) is that no family will go through the devastating journey of Batten disease alone. The BDFA's vision is to bring light to Batten disease by being the central point of excellence in the UK for supporting affected families and to...
Beckwith-Wiedemann Support Group UK
The BWS support group was started in 1990 in order to share problems and promote both public and professional awareness of BWS and to support and encourage research. The group has links with BWS groups in America and Holland. It publishes a newsletter and information sheets.
British Porphyria Association
The British Porphyria Association was established in 1999 by a group of patients and relatives of patients. They had experienced isolation and difficulties caused by their diagnosis, but found a general lack of understanding and assistance available, as it is such a rare condition.
British Tay-Sachs Foundation
Information, screening and funds research
Children's Mitochondrial Disease Network
The Children's Mitochondrial Disease Network is a registered charity in the UK concentrating on the specialities and complexities of Mitochondrial Disorders in children and adults. The following are Mitochondrial Disorders: Alpers Disease; Barth Syndrome (Cardiomyopathy); Carnitine Deficiency;...