Unique (The Rare Chromosome Disorder Support Group)
Offers information and support to families and individuals affected by any rare chromosome disorder and to professionals who work with them; includes a library of resources, membership details, contacts, and fundraising. Unclaimed: Claim this business
Wolf Hirschhorn Syndrome Trust
Offers advice, support and friendship to anyone with an interest in Wolf Hirschhorn Syndrome; includes information online and to download about the condition, newsletters, and contacts. Unclaimed: Claim this business
Androgen Insensitivity Syndrome Support Group (AISSG)
Provides information and support to young people, adults and families affected by XY-female conditions; offers a comprehensive library of information about this group of conditions. Unclaimed: Claim this business
Angelman Syndrome Support Education & Research Trust (ASSERT)
Offers support to families affected by the neurological disorder and professionals working with them, and for research into its causes and treatment. Includes information resources and a directory of related links. Unclaimed: Claim this business
Barth Syndrome Trust
Works to help and support affected families and medical professionals; includes information resources, links, and details of the national NHS Barth Syndrome Service based in Bristol Royal Hospital for Children. Unclaimed: Claim this business
Batten Disease Family Association
Works to support families, raise awareness and facilitate research into the group of neurodegenerative diseases commonly known as Batten Disease. Includes a library of information, and details of their services and fundraising. Unclaimed: Claim this business
CAH Support Group
Works to support families and sufferers from congenital adrenal hyperplasia; includes information about the condition and advice on living with it, forums, events, and contacts. Unclaimed: Claim this business
Cornelia de Lange Syndrome Foundation UK and Ireland
Works to ensure early and accurate diagnosis of CdLS; includes information about the syndrome, treatment protocols, resources, and contacts. Unclaimed: Claim this business
Costello Syndrome Support Group
Provides a library of resources, advice, and information for parents of children with this rare genetic condition; also provides newsletters and details of conferences. Unclaimed: Claim this business
Cri du Chat Syndrome Support Group
Works to provide support to people with Cri du Chat syndrome, and to their families and carers, and professionals. Includes a library of information resources, membership, events, and fundraising. Unclaimed: Claim this business
Cystinosis Foundation UK
Works to support individuals and families affected by the disorder, and supports researchers in the field of cystinosis. Includes an information library, listing of specialist treatment centres, and how to help their fundraising. Unclaimed: Claim this business
Ectodermal Dysplasia Society
Provides information and support for families and individuals affected by this group of genetic disorders involving the development or function of the teeth, hair, nails and sweat glands; with contacts, resources, and how to help. Unclaimed: Claim this business
Gauchers Association
Provides information and resources about Gaucher disease and therapies, supports research, and a support network for affected people and their families. Unclaimed: Claim this business
Marfan Trust
Raises funds to support research into the cause and prevention of Marfan syndrome; includes information about the condition, research projects, and how to get involved. Unclaimed: Claim this business
The Haemochromatosis Society
Provides information resources and advice for people affected by this genetic disorder that causes the body to absorb an excessive amount of iron; also includes a section for professionals. Unclaimed: Claim this business
Ciliopathy Alliance
Brings together patient support groups, researchers, doctors and allied health professionals representing patients and families living with and affected by ciliopathies. Unclaimed: Claim this business
The Rare Chromosome Disorder Support Group
Aims to inform, support and alleviate the isolation of anyone affected by a rare chromosome disorder and to raise public awareness. Unclaimed: Claim this business
APS Support UK
Aim to achieve earlier diagnosis and improved treatment of antiphospholipid (APS) through education, information, support, and research. Unclaimed: Claim this business
Beckwith Wiedemann Support Group
Formed to allow parents with BWS children to share problems and information; includes information resources about the condition, personal stories, and a guide to current research. Unclaimed: Claim this business
CGD Society
Leading charity in the world dedicated to promoting an understanding of chronic granulomatous disorder and providing support to affected individuals and their families. Unclaimed: Claim this business
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