American Cancer Society
American Diabetes Association
A nonprofit health organization providing diabetes research, information and advocacy.
American Heart Association
A national health agency whose mission is to reduce disability and death from cardiovascular diseases and stroke.
CancerSource
(last accessed 2/2008)
CancerSource is a source of cancer information, interactive tools, news, and community support for cancer patients, families, and health care providers.
Chromosome Deletion Outreach
A national support group for individuals and families with chromosome deletions, rings, translocations, duplications, and inversions.
Council for Responsible Genetics
A national nonprofit organization of scientists, public health advocates, and others which promotes a comprehensive public interest agenda for biotechnology.
Cystic Fibrosis Foundation
Committed to the development of the means to cure and control cystic fibrosis and to improve the quality of life for those with the disease.
Down Syndrome WWW Page
Established in February of 1995 and compiled from the contributions of members of the Down Syndrome Listserv and others.
Familial Dysautonomia HOPE Foundation
A nonprofit organization with a mission to expand and accelerate scientific research that will find a cure and treatment options for FD.
FRAXA Research Foundation
A national, nonprofit, entirely volunteer organization run by parents and medical professionals, FRAXA funds medical research aimed at finding a specific treatment for fragile X.
Genetic Alliance
A non-profit organization dedicated to helping individuals and families with genetic disorders. Its web page contains an extensive list of disease-specific support groups.
The Genetic Interest Group
A national alliance of organizations in the UK with a membership of over 120 charities which support children, families and individuals affected by genetic disorders.
Hereditary Colon Cancer Association
HCCA's mission is to promote awareness, education and prevention of hereditary colon cancer and raise awareness for the need for more research to find better treatments for those who are at risk and currently have a hereditary colon cancer.
Hereditary Disease Foundation
A non-profit, basic science organization dedicated to the cure of genetic disease.
The Hypoparathyroidism Association
A voluntary, non-profit organization dedicated to improving the lives of people with all forms of Hypoparathyroidism, a rare medical disorder, by maintaining a worldwide network of family support, and promoting public, as well as professional, awareness of this disorder through a quarterly newsletter and our website.
March of Dimes Foundation
A non-profit organization dedicated to improving the health of babies by preventing birth defects and infant mortality. The March of Dimes carries out this mission through programs of research, community services, education and advocacy.
MedPed and Inherited High Cholesterol Foundation
A survey research project and non-profit organization funded to register and help people with inherited cholesterol disorders.
National Neurofibromatosis Foundation
A non-profit medical foundation, dedicated to improving the health and well-being of individuals and families affected by the neurofibromatoses.
National Organization for Rare Disorders
Committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.
National Tay-Sachs and Allied Diseases Association
Dedicated to the treatment and prevention of Tay-Sachs and related diseases, and to the provision of information and support services to individuals and families affected by these diseases, as well as the public at large.
Online Genetic Syndrome Support Groups
This website lists only genetics support group websites, providing quick way to see if a group is online.
The World Federation of Hemophilia
A private, non-profit organization whose mission is to promote and advance services and care worldwide to persons with hemophilia and related bleeding disorders.
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Provides link to non-governmental sites and does not necessarily represent the views of the Centers for Disease Control and Prevention. |
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