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HD Lighthouse -
Huntington's Disease: Information and Community
Huntington's Disease Advocacy
Center - By HD Families for HD Families.
Huntington's Disease Society of
America
Gene Veritas – At Risk for Huntington's Disease
St. John's University HD Discussion Group
American Hemochromatosis Society
- information on hereditary hemochromatosis, the most common genetic disorder in the United
States according the the Center for Disease Control.
American Society for
Neural Transplantation and Repair - information pertaining to neural
transplantation.
Case Management Resource Guide
- offers free access to a fully searchable database covering over 40 categories of healthcare services, including homecare, rehabilitation, long-term care, behavioral health, specialty services and disease management.
Department of Neurology at
Massachusetts General Hospital - for answers to your questions about the brain.
Dana BrainWeb
- The BrainWeb is the
result of a search of hundreds of sites to select, for each of 21 common
brain diseases and disorders, up to four sites that provide validated
current information useful for the lay person.
Disability Resource
- practical information about living with a disability. This web site includes a book store, a searchable database, and an event calendar. It also provides links to companies that provide assistive technologies for people with disabilities. Earth
Source CoQ10 - coenzymeQ10 (CoQ10)
is a fat-soluble vitamin-like substance crucial to energy production in every
cell in the body, and an important part in the slowing of Huntington's
progress. My mission was to get a quality CoQ10
to those who need it at an affordable price.
Faces of Huntington's - a collection of stories, essays, poems, and quotes of those who are in some way connected to Huntington's Disease. The book focuses on over sixty people who have HD, are at risk, caregivers, other family members, and friends.
Foundation for Biomedical Research
(FBR) - established in 1981 to improve the quality of human and animal health by
promoting public understanding and support of the ethical use of animals in
scientific and medical research.
Genetic Alliance - formerly the Alliance of Genetic Support Groups, for information on an online second edition of their Directory.
HOPES:
Huntington's Outreach Project for Education
- a student-run project at Stanford University, focusing on the scientific side of Huntington's disease. The
site's aim is to make accessible recent research on the causes and effectsof HD and what can be done about them.
Howard Hughes Medical Institute
- up-to-date information on all areas of biomedical research including wonderful
basic information on genetics.
Huntington Study Group
(HSG) - non-profit group of physicians and other health care providers from medical centers in the U.S., Canada, Europe and Australia, experienced in the care of Huntington patients and dedicated to clinical research of Huntington's disease.
Huntington's
Disease: Hope through Research - published by the National Institute of Health, an informative
booklet covering most
aspects of the disease.
The Jackson Laboratory,
founded in 1929, is the world's largest mammalian genetics research
institute. They are also recognized worldwide for their contributions to
advancing human health by being the world's largest mouse model repository.
Their mission is to improve the quality of human life through discoveries
arising from their own genetic research and by enabling the research and
education of others. Huntington's Disease, among other ailments, is an area
where we provide research support in the form of mouse models.
Kansas University Medical Center's
Parkinson's Disease and Movement Disorder Center now has a page devoted to help on school projects related to Huntington's Disease.
Kansas
University Medical Center - for information on caring for people with
Huntington's disease.
Keep
Memory Alive - the foundation for the Lou Ruvo Alzheimer's
Institute, is a Las Vegas based nonprofit organization dedicated to the
fight against Alzheimer's, Parkinson's, and Huntington's disease as well as
other related disorders associated with the aging of the brain.
The National Institutes of Health (NIH) has published an informative
booklet about "Huntington's Disease: Hope Through Research."
The National Institute of Neurological Disorders and Stroke,
is the leading federal supporter of research on disorders of the brain and nervous system. The Institute also sponsors an active public information program with staff who can answer questions about diagnosis and research related to Huntington's Disease.
National Organization for Rare
Disorders - clearinghouse for information on more than 5,000 orphan
diseases.
National Society of Genetic Counselors
- acts as the leading voice,
authority and advocate for the genetic counseling profession. Their
"Resource Link" has been developed to assist consumers in locating
genetic counseling services and for students interested in the
profession. Counselors are listed by state and city.
NeuMetrix - The
NeuMetrix Data Repository contains more than 15,000 data files generated from
DNA microarray experiments using a variety of animal models for Huntington's
disease and related disorders. Neural
organization links - provided by the University
of Ulm, Germany.
The
New York Brain Bank - Many neurodegenerative disorders are unique to human
beings. Therefore, brains from other species are of limited value for research.
Human brain donation is crucial! It is a priceless gift leading to new
understanding and cures. Furthermore, the definite diagnosis of
neurodegenerative diseases depends on a postmortem examination of the brain.
Office of Rare Diseases
- provides information on more than 6,000 rare
disease and clinical trials. Their website has four components: patient
resources about rare conditions and their treatment; education and
support organizations of interest; resources for research on rare
diseases; and a rare diseases clinical research database.
Our Chronic Pain Mission
- a site to help the chronic pain sufferer.
Research! America
- the nation's
leading non-profit, non-partisan voice for making medical and health research a
higher national priority. Its membership represents more than 375 academic
institutions, independent research laboratories, teaching hospitals, private
industries, professional societies, voluntary health agencies and
philanthropies. Research! America's mission is to make
medical and health research a much higher national priority.
Science Policy Forum of the
American Academy for the Advancement of Science.
Task Force
on Genetic Testing - part of the DOE-NIH Working Group on Ethical, Legal
and Social Implications of the Human Genome Project, has concluded a
two-year study of genetic testing in the United States. View their published
recommendations which are designed to help ensure that such tests are safe
and effective.
Tracey's personal website for Huntington Disease in Australia
WEMOVE
- Worldwide Education and awareness for Movement Disorders.
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