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Single Gene Disorders and Disability (SGDD) |
Collaboration, Education, and Test Translation (CETT) Program for
Rare Genetic Diseases
The CETT program was developed by the Office of Rare Diseases at the
National Institutes of Health (NIH). It is often difficult to find
genetic tests for rare diseases. The CETT program provides education
about rare diseases and helps laboratories develop genetic tests for
them.
Genetic Alliance
Genetic Alliance is an international coalition with more than 600
advocacy, research, and health care organizations that represent
millions of people with genetic conditions and their interests. The
alliance works to improve the quality of life for everyone living
with genetic conditions by providing technical assistance to
advocacy organizations and supporting capacity building in
communities.
Gene Tests
Gene Tests is a website developed for doctors, researchers, and
other health care providers as a resource for genetic information.
The website includes reviews on different genetic diseases (click on
GeneReviews) and genetic testing issues. (See reviews for
Fragile X
and
Duchenne/Becker.)
March of
Dimes
The March of Dimes is a not-for-profit organization that works to
improve the health of babies by preventing birth defects, premature
birth, and infant mortality. The organization includes researchers,
volunteers, educators, outreach workers, and advocates who work to
save the lives of babies through research, community services,
education, and advocacy.
National Marfan
Foundation
The National Marfan Foundation is dedicated to saving lives and
improving quality of life for individuals and families affected by
the Marfan syndrome and related disorders. Together with their
National Volunteer Network, including chapters, support groups, and
other local contacts, they disseminate information, provide support,
and foster research.
National Newborn Screening and Genetics Resource Center (NNSGRC)
The NNSGRC provides information and resources about newborn
screening and genetic disorders for health care providers, the
public health community, consumers, and government officials.
National Organization for
Rare Disorders (NORD)
NORD is a group of voluntary health organizations that help people
who have rare diseases and the groups that represent them. NORD has
information about diseases, patient support groups, research grants
and fellowships, the rare-disease community, and medication
assistance programs.
NIH
Office of Rare Diseases
The Office of Rare Diseases (ORD) at the National Institutes of
Health was established to increase and coordinate research on rare
diseases. Rare diseases are defined as diseases or conditions that
affect fewer than 200,000 persons in the United States. ORD supports
research that helps patients who have any one of the more than 6,000
rare diseases known today.
Wellstone Muscular Dystrophy Research Centers
The Senator Paul D. Wellstone Muscular Dystrophy Cooperative
Research Centers were established to increase research on all forms
of muscular dystrophy. The centers are located at major universities
around the United States and conduct research on the many different
issues involved with muscular dystrophy. More information about each
center can be found at the centers’ individual websites:
Children's National Medical
Center
University
of Iowa
University of Pennsylvania
University of
Pittsburgh
University of Rochester
University of
Washington
Your Genes Your Health
The Your Genes Your Health website offers a multimedia guide to
genetic disorders and has information on many genetic diseases.
 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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Date: September 1, 2006
Content source: National Center on Birth Defects and Developmental
Disabilities
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