Self Help Groups

Aarskog Syndrome Support Group (U.K.)
Offering support and information to those affected by the Syndrome, their families, and professionals who may deal with the Syndrome.
Action Duchenne
Action Duchenne aims to: Find a viable treatment and cure for Duchenne and Becker muscular dystrophy. Identify and fund research programmes, utilising scientists from around the world whose major interests are Duchenne muscular dystrophy research. Increase worldwide awareness of the...
Action Medical Research
Leading charity Action Medical Research is dedicated to building a better, healthier future by investigating many serious illnesses.
AGSD(UK)
Provide information on GSD letter, telephone, internet. Encourage provision of specialist care/research centres. Act as focus of scientific, educational and charitable activities for GSD.
Albinism Fellowship
Voluntary organisation that aims to provide advice and support for people with Albinism, or indirectly through their parents, families or the professionals working with them. Opportunities to contact other individuals and families, regional meetings and social events, Bi-annual National...
ALD LIFE
ALD LIFE aims to help all affected by or interested in adrenoleukodystrophy and adrenomyeloneuropathy, whether personally or medically. They will try and help you to become Aware, Learn and Discuss the many implications of this disorder. They also support families and promote research into the...
Alkaptonuria Society
The Alkaptonuria Society's aim is to create an information and support network for those people diagnosed with the condition. Their job is to find the latest news, research and treatments and provide people with the best information they can. The society also runs a joint replacement...
Alpha-1 UK
This is an on line mailing list if you would like to be put in contact with other people living with alpha-1 antitrypsin deficiency in the UK. By writing a post to the list all members receive it, and can answer, and discuss any issues
Alström Syndrome UK
Alström Syndrome UK has three key aims: To help people with Alström syndrome - to provide support for them, their carers and the professionals who are working with them. To raise awareness amongst both the public and medical professions of Alström syndrome. To raise funds to promote research...
AMN-Easier
AMN-Easier provides telephone advice, information and support to adult men and women who have recently been diagnosed as having adrenoleukodystrophy (ALD) or adrenomyeloneuropathy (AMN).