Alagille Syndrome Alliance
Worldwide support network for people who care about people with alagille syndrome.
http://www.alagille.org/ | |
Canadian Association of Genetic Counsellors
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/ | |
Chromosome 9P- Network
international not-for-profit organization dedicated to educating and bringing together families with children who have Alfi's syndrome.
http://www.9pminus.org/ | |
Costello Kids
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/ | |
Fatty Oxidation Disorders
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/ | |
Gene Clinics
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 | |
Genetic Alliance
provides a global resource for genetics information including a directory of condition-specific lay advocacy member groups.
http://www.geneticalliance.org/ | |
Genetic Health
offers general information on conditions, DNA mutations, genetic testing, and research participation.
http://www.genetichealth.com/ | |
Genetic Interest Group
national U.K. alliance of organizations which support children, families, and individuals affected by genetic disorders and genetic diseases.
http://www.gig.org.uk/ | |
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/ | |
Joubert Syndrome Foundation
Organization, conferences and contact details. FAQs about the disease, information center and resources.
http://www.joubertfoundation.com/ | |
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 | |
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 | |
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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