Educational Links
A concise outline of basic human genetics principles
written by James Weber, Ph.D. This site won the Star
Award from the Awesome Library of Educational Web Sites in 2004.
Less than 2.5% of the Awesome Library's resources have
a star rating.
Information available on the Web about genomics, health and
patient support organizations and resources.
This site is a genetic testing resource funded by
the National Library of Medicine of the NIH and Maternal & Child
Health Bureau of the HRSA.
Angioma Alliance is a non-profit international
voluntary health organization created by people affected by cavernous
angioma (cerebral cavernous malformations). Their mission is to improve
the quality of life for those affected by cerebral cavernous malformations
through education, support, and promotion of research.
This site is dedicated to reducing morbidity and mortality
of Malignant Hyperthermia by:
- improving medical care related to MH
- providing support information for patients and
- improving the scientific understanding and research related to MH
and other kinds of heat-related syndromes.
The mission of The Progeria Research
Foundation is to find the cure and effective treatment for Progeria
and its aging related disorders. It is the vision of The Progeria Research
Foundation to be the driving force worldwide to:
- Discover the cure
- Develop treatment
- Provide information and guidance
- Be a valuable resource for Progeria families
The Noonan Syndrome Support Group,
Inc., is committed to providing support, current information and understanding
to those affected by Noonan Syndrome and its associated anomalies.
It is also their goal to raise the
awareness of, and educate the medical community, as to the complex nature
of this syndrome and how it affects the lives of those who have it.
It is the mission of PXE International
to initiate, fund and conduct research; provide support for individuals
and families affected by pseudoxanthoma elasticum; and provide resources
for healthcare professionals.
The Genetic Alliance is an international
coalition of families, health professionals and genetic organizations
dedicated to enhancing the lives of everyone living with genetic conditions.
Representing more than 300 lay advocacy organizations and their millions
of members, the Alliance works to improve the health of all by fostering
the integration of genetic advances into quality healthcare, public
awareness and consumer-informed public policies.
The mission of the Office of Genetics
and Disease Prevention is to integrate advances in human genetics into
public health research, policy, and programs.
This website provides basic information about the glycogen storage
diseases. The information is intended to be of use to people affected
by one of the glycogen storage diseases, their families, and other interested
parties.
The CFC International is a source of information, formed to raise awareness
and educate the public as well as families about Cardio-Facio-Cutaneous
Syndrome. Here you will get a closer look of who we are, what we do,
and how you can contact us for more information or to find out how you
can help support our efforts.
The Lymphatic Research Foundation is a 501(c)(3) not-for profit organization whose mission is to advance research of the lymphatic system and to find the cause of and cure for lymphatic diseases, lymphedema, and related disorders.
The National Human Genome Research
Institute (NHGRI) website provides detailed information on how the Human
Genome Project (HGP) was initiated and how it is progressing, who is
involved and opportunities for research funding. This site also contains
links to other HGP related publications and information sources.
The source for timely information about genes in education.
The National Library of Medicine's web site for consumer
information about genetic conditions and the genes or chromosomes responsible
for those conditions.
At Orpha.Net, you can find out about
hundreds of disorders affecting no more than one person out of 2000.
Researchers can search for information on a particular disease and pull
up a description of the symptoms and underlying cause. The entries also
record orphan drugs, treatments for rare diseases that are unprofitable
to manufacture, and link to research projects and clinical trials around
the world.
This site provides information about ORD-sponsored
biomedical research, scientific conferences, rare and genetic diseases
in English and Spanish, and a portal to information on major topics
of interest in the rare diseases community.
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