Canavan Research Foundation
Details of this brain deteriorating disorder with stories and images plus how to donate towards reasearch programmes. Unclaimed: Claim this business
CGD Research Trust
Funds research into Chronic Granulomatous Disorder, a rare genetic condition; also provides support to families affected. Includes information about the condition, potential treatments, and ongoing research. Unclaimed: Claim this business
Climb National Information Centre for Metabolic Diseases
Provides information and support on inherited metabolic diseases to children, adults, families, carers and professionals. Contains events diary, forum, newsletter and resources. Unclaimed: Claim this business
Fanconi Hope
Promotes research into Fanconi Anaemia, a genetic disorder affecting children that causes bone marrow failure and predisposes to cancer. Offers information on support for families, plus fundraising news and details of how to help. Unclaimed: Claim this business
Gorlin Syndrome Group
Patient group and support network offering guidance, advice and information to patients, their families and carers whose lives are touched by Gorlin Syndrome. Features FAQ, articles and forum. Unclaimed: Claim this business
Lowe Syndrome Association
Aims to support affected families and support research into the rare genetic condition; provides background and a FAQ, details of conferences and research, news, links, and contacts. Unclaimed: Claim this business
Marfan Association UK
Formed to support those with Marfan Syndrome and their families, and to encourage research and education in the condition; with a library of information and resources, and contacts. Unclaimed: Claim this business
Max Appeal
Supporting families affected by DiGeorge Syndrome. Contains factsheets, event listings, newsletters and fundraising details. Unclaimed: Claim this business
Nail Patella Syndrome UK
Works to raise awareness of the condition, and to raise funds to support research; includes a resource library, and contacts. Unclaimed: Claim this business
National Society for Phenylketonuria
Formed to help and support people with PKU, their families and carers; includes background on the condition, advice on diet and management, other resources, and contacts. Unclaimed: Claim this business
Primary Ciliary Dyskinesia Family Support Group
Provides an information service about the condition, how it is diagnosed, and how to live with it on a daily basis, with a support forum, FAQ, and how to support. Unclaimed: Claim this business
Proteus Family Network UK
Support group for families and individuals affected by Proteus Syndrome, which causes skin overgrowth, atypical bone development and body tumours. Includes background information on the condition. Unclaimed: Claim this business
Pseudoxanthoma Elasticum (PXE) Support Group (PiXiE)
Aims to encourage, support and assist those with PXE and their family members; includes information about the condition, case histories, news and contacts. Unclaimed: Claim this business
Smith-Magenis Syndrome Foundation UK
Features information on family support and fundraising efforts by this charity; Smith Magenis Syndrome is genetic disability due to a microdeletion or abnormality of chromosome 17. Unclaimed: Claim this business
SOFT UK
A support organisation for parents of babies affected by trisomy 13/18, Patau's and Edwards' syndrome and related disorders; includes a comprehensive library of information and advice, with contacts and other resources. Unclaimed: Claim this business
Stickler Syndrome Support Group
Shares information on this group of genetic disorders which affect connective tissue. Includes downloadable guides. Unclaimed: Claim this business
Telangiectasia Self Help Group
Maintains a register of sufferers of Hereditary Haemorrhagic Telangiectasia, and puts affected families in touch with one another; offers factsheets and newsletters. Unclaimed: Claim this business
Treacher Collins Family Support Group
Providing information about this syndrome, which casuses facial malformations and severe hearing loss. With photographs, newsletters and links. Unclaimed: Claim this business
Tuberous Sclerosis Association
Promotes awareness and research into the Tuberous Sclerosis Complex; provides information and resources for affected individuals and families, news, and contacts. Unclaimed: Claim this business
Turner Syndrome Support Society
Offers support, advice, and information to women and girls with Turner Syndrome and their families. Includes news and contacts. Unclaimed: Claim this business
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