Services and Programs
Pediatric Genetics
Resources for Patients and Families
-
Genetic
Alliance Includes information on a wide variety of genetic
disorders as well as a database of support groups throughout
the nation. Also provides public policy information.
-
Gene
Tests Funded by the National Institutes of Health, the
web site features information regarding genetic testing and
research of a multitude of genetic conditions. Site also features
a listing of clinics nationwide.
-
March
of Dimes The primary purpose of this organization is to
save the lives of babies who face premature birth, birth defects,
genetic disorders, as well as other diseases that can occur
in infancy. The site offers information on a wide range of conditions,
as well as timely news articles.
-
National
Fragile X Foundation This site offers support and education
to families facing this number one cause of mental retardation.
Includes a special section for the "Newly Diagnosed"
as well as information for physicians.
-
Children's Tumor Foundation This site provides information
on Neurofibromatosis, as well as a wealth of other information
and resources for patients and families, including local support
group information, chat rooms and bulletin boards, and youth
programs.
-
-
National
Organization for Rare Disorders This national organization
is an advocate for patients with rare disorders, promoting and
fundraising for research and providing information to the government
and medical community.
-
National
PKU News News and information source for patients and families
living with PKU. This site is maintained by an experienced dietician
for PKU patients, and has written several books and cookbooks
on living with PKU.
-
OMIM
- Online Mendelien Inheritance in Man Sponsored by the
National Institutes of Health, this site provides an online
catalog of humane genes and genetic disorders. Primarily
for the use of physicians and researchers, patients and the
general public can also access basic information.
-
Prader-Willi
Alliance The Prader-Willi Alliance of New York provides
news, information, support and networking opportunities to patients,
families and the medical professionals who treat patients with
Prader-Willi Syndrome.
-
Prader-Willi
Syndrome Association This national association is a resource
for education and information about Prader-Willi Syndrome to
both families and medical professionals.
|
|