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PXE International
The comprehensive source for pseudoxanthoma elasticum research and world wide activities.
http://pxe.org
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/
Robinow Syndrome Foundation
Details about the organization as well as the disease. Includes general information, a survey, newsletter and photos.
http://www.robinow.org/
Spiral Notebook: Carnitine Palmitoyl Transferase Deficiency
a newsletter about a rare genetic disorder of fat metabolism that causes muscle breakdown.
http://www.spiralnotebook.org/
The Alkaptonuria Society
An information and support network for those people diagnosed with Alkaptonuria. Includes discussions, articles and related resources.
http://www.alkaptonuria.info/
The Noonan Syndrome Support Group
Information about this organization as well the disease itself. Offers news, events, a survey, a newsletter and further resources.
http://www.noonansyndrome.org/
The Stennis Foundation
Raising public awareness regarding Metachromatic Leukodystrophy (MLD) as well as funds for MLD research.
http://www.stennisfoundation.org/
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
Velo-Cardio-Facial Syndrome Educational Foundation
Details about this organization as well as an extensive fact sheet about the disease. Includes details about support groups, a mission statement and contact information.
http://vcfsef.org/
Xeroderma Pigmentosum Society
provides information on the disease also known as XP.
http://www.xps.org/
Your Genes, Your Health
a multimedia guide to specific individual genetic disorders from the Dolan DNA Learning Center at Cold Spring Harbor Laboratory.
http://www.yourgenesyourhealth.org/
Your Genes, Your Health
The DNA Learning Center's multimedia guide to genetic disorders. Complete in depth articles about each disease listed.
http://www.ygyh.org
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