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Worldwide support network for people who care about people with alagille syndrome. http://www.alagille.org/ |
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works to establish minimum standards of practice, to encourage professional growth, and to increase recognition of the genetic counselling profession in Canada. http://www.cagc-accg.ca/ |
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international not-for-profit organization dedicated to educating and bringing together families with children who have Alfi's syndrome. http://www.9pminus.org/ |
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Official site of the International Costello Syndrome Support Group. Includes medical information, photographs and videos, therapy ideas, news, and links. http://www.costellokids.co.uk/ |
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Informational site provides details on newborn screening, on numerous diseases, medical information and support resources such as a newsletter and email List. http://www.fodsupport.org/ |
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Medical genetics knowledge base. NIH funded, expert-authored descriptions of inherited disorders. Covers genetic testing in diagnosis and management and genetic counseling of patients. http://www.geneclinics.org |
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provides a global resource for genetics information including a directory of condition-specific lay advocacy member groups. http://www.geneticalliance.org/ |
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offers general information on conditions, DNA mutations, genetic testing, and research participation. http://www.genetichealth.com/ |
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national U.K. alliance of organizations which support children, families, and individuals affected by genetic disorders and genetic diseases. http://www.gig.org.uk/ |
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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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nonprofit, basic science organization dedicated to the cure of genetic disease. http://www.hdfoundation.org/ |
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The IMMD is a genetic testing laboratory located in Germany. Provides genetic tests for hereditary breast cancer, various cardiovascular diseases or diseases with onset in childhood. http://www.immd.de/ |
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Offers education, medical referrals, up-dates, and support to all individuals interested in Machado-Joseph Disease. http://www.ijdf.net |
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Organization, conferences and contact details. FAQs about the disease, information center and resources. http://www.joubertfoundation.com/ |
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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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information forum on ML$, a rare genetic disease. http://www.ml4.org/ |
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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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For PHS patients, their care givers, and medical practitioners. http://www.pallisterhall.com/ |
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information and support for this rare chromosomal disorder. http://www.pk-syndrome.org/ |
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Support and education for families and professionals. Includes abstracts, brochures, glossary, links and newsletters. http://www.proteus-syndrome.org/ |
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