The
Hereditary Disease Foundation is a non-profit, basic-science
organization dedicated to the cure of genetic disease. 100% of all publicly
donated funds is directed to the support of biomedical research… The Hereditary
Disease Foundation focuses on Huntington's disease
BREAKING NEWS: "HDF Commits Over $20 Million in 2003 to Find New Treatments and a Cure for Huntington's Disease." See Our Latest Newsletter, Available Now! [.pdf version (3.7MB) ] [.jpg version]
The Huntington's Disease Society of America (HDSA) is dedicated to finding a cure for Huntington's Disease (HD) while providing support and services for those living with HD and their families. HDSA promotes and supports both clinical and basic HD research, aids families in coping with the multi-faceted problems presented by HD and educates the families, the public and health care professionals about Huntington's Disease
Helpful Links from HDSA
website
The future for which Huntington Society volunteers have fought for so many years is unfolding right now. Our dream -- effective new treatments, and ultimately a cure for Huntington disease (HD) -- is taking shape around the world. At the same time the Society's commitment to serving the needs of those whose lives are touched by HD has never been stronger.
The Huntington's Disease Lighthouse (HDL) is a resource for the treatment of Huntington's Disease; The latest science for patients, caregivers, medical professionals and researchers.-- Jerry Lampson, Lighthouse Keeper.
The HDL was originally had a readership of three, two nurse's aides and one nurse. They were among the first health care professionals seeking knowledge on the Internet. I read a lot and posted what I thought would help them care for my wife… Good science simply explained is persuasive. From the original three readers the site has now grown to over a thousand pages served each day.
On your journey with HD the HDL will be here for you, to listen to you and to respond. The HDL will look at the rapid progress of science. If you are proactive you will have your own plan to fight HD. You can look to the HDL, on this rocky shore of what is known and not known about HD, for information.
Our goal is threefold:
HUNT-DIS (part of HDAC)
The HUNT-DIS mailing list is for discussing all aspects of life as it is affected by Huntington's Disease in one or more family members. We welcome discussions of any topic directly related to how Huntington's has, is or will be affecting your life. All family members are invited to join including spouses, parents, and children of a Huntington's individual as well as any person afflicted with or at risk for Huntington's Disease.
HOPES is a team of students and faculty
at Stanford University working to build a public web resource on Huntington's
Disease. Our goal is to complement the Huntington's
Disease Advocacy Center (HDAC) website by focusing on the scientific side
of HD.
The Huntington Study Group (HSG) is a 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.
The HSG is now accepting clinical trial participants. See THERAPEUTIC TRIALS.
The Huntington Project brings together clinical and basic scientists, individuals and families affected by Huntington’s disease (HD), advocacy groups, and all others in the HD community to find and develop treatments that make a difference in the lives of those affected by HD. By engaging the entire community in the planning and execution of clinical research, the Huntington Project will maximize the efficiency and fruitfulness of the search.
Connecting HD people to HD research.
Our mission is to create and coordinate a medically supervised system in the home community for people affected by Huntington's disease which allows for and promotes:
1. The individual's access to and medical supervision for drugs of potential therapeutic benefit
2. The individual's assessment for potential therapeutic benefit of a drug or drugs
HDDW's single goal: the earliest possible therapeutic
benefit is correctly identified and used in individuals of this generation of
Huntington's people.
A blog, short for 'weblog', is a website that contains a log of messages. HD Blog will focus on news that relates to Huntington's Disease research. When possible, the information will be linked with commentary. This is a community, so feel free to add your comments.