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
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.
The
Genome Action Coalition
Comprised of more than 130 member organizations that span a
diverse range, including patient advocacy associations and foundations,
professional groups in the field of genetics, pharmaceutical
research and biotechnology companies, and university-based research
entities.
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 Web Site.
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
Alliance of Breast Cancer Organizations
A network of breast cancer organizations providing information,
assistance, and referral to anyone with questions about breast
cancer.
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.
Online
Resource Center
Year-round resource for genetic counselors, other professionals,
and the public.
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. |