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Proteus Syndrome Foundation
Support and education for families and professionals. Includes abstracts, brochures, glossary, links and newsletters.
http://www.proteus-syndrome.org/
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Rett Syndrome Association (UK)
The Rett Syndrome Association UK, a registered charity, is dedicated to the support of girls and women, together with their families and carers, suffering from this complex neurological disorder, which affects them throughout their lives. Sufferers are profoundly and multiply disabled.
http://www.rettsyndrome.org.uk/
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Nail Patella Syndrome Worldwide
The home page of Nail-Patella Syndrome Worldwide, the only non-profit serving the needs of people with Nail-Patella Syndrome. Includes information on the syndrome and the work of the organization.
http://www.nailpatella.org
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Laurence Moon Bardet Biedl Society
Fully accessible site for people with LMBB, their families, friends, carers and interested professionals. Opinions, news, views, research, updates, and contact details.
http://www.lmbbs.org.uk
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PXE International
The comprehensive source for pseudoxanthoma elasticum research and world wide activities.
http://pxe.org
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Hereditary Angioedema Support Group
A non profit Organization dedicated to those families that are touched by a rare blood disease known as Hereditary Angioedema
http://www.hereditaryangioedema.com/
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The Sturge-Weber Foundation
A support site for individuals and professionals dealing with Sturge-Weber syndrome, port-wine stains and Klippel Trenaunay. The Foundation acts as clearing house for information and a focus for research.
http://www.Sturge-Weber.com
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