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The Indiana Chapter of the Huntington's Disease Society of America is a voluntary health organization dedicated to improving the lives of people with HD and their families. Indiana's quest for the cure for HD began in 1969 soon after the Committee to Combat Huntington's Disease was formed. The Chapter has continued in it's fight against HD for 40 years!
At present, the Chapter has an Executive Board and a Board of Trustees. Board meetings, held on a quarterly basis, are open to the public. The Chapter has a number of support groups that are located across the state and that assist in furthering the mission of the Chapter.
In January of 2005, Indiana University Medical Center and the Indiana Chapter of the HDSA were designated a HDSA Center of Excellence. Through this collaboration the outstanding care and services that patients received in the past were enhanced by the addition of more services. The HDSA Center of Excellence also allows patients to obtain services at one location, therefore making the services easier for the patients and their families.
The Indiana HDSA Chapter: assists individuals and families affected by HD to cope with the problems presented by HD; educates the public and health professionals about HD; advocates for all interests of those affected by Huntington's Disease; and promotes and supports research on HD to eradicate this fatal disease.
Information as well as a Referral / Lending Library are available to both families and healthcare professionals. Literature including articles, pamphlets, books, and videos are available for distribution. Many of these publications and documents are available in e-format for download. A good place to start looking for information and publications is at the HDSA publications web page.
Support Groups meet in various locations throughout the state of Indiana. Activities include supportive interaction; sharing of current information on HD related issues; social events; and fundraising. To see a listing of the current Indiana support groups, contact person, meeting locations and times click here.
In service Training of medical professionals of all types is offered by the Chapter to promote better understanding about Huntington's Disease, patients and families. The Patient & Family Service Chair from the HDSA Center of Excellence will conduct in-house training seminars throughtout the state to health professionals on a request basis. This training is invaluable for improving the quality of life for patients with HD and for the staff of care facilities. To get more information about in service training email Patient & Family Service Chair, HDSA Center of Excellence.
Indiana HDSA State Conference is held annually and is a day full of information, education and fellowship. Our conference offers leading researchers, latest medical breakthroughs and workshops on topics important to HD patients and their families. The state conference is attended by everyone from symptomatic and at-risk individuals to caregivers and medical professionals. For more information about this year's state conference click here.
Hoosier Highlights Newsletter offers information about the latest HD research, suggestions for caring for patients, meeting and conference notices, announcements of featured speakers who are experts in HD research and the current laws, as well as proposed legislation as it affects HD patients and families. To see the current issue of Hoosier Highlights click here. To subscribe to a mailed copy of Hoosier Highlight email here.
Fundraising activities are held by the individual state support groups and by the Board of Directors. The Chapter also cooperates with affiliated organizations in fund raising activities to support HD families and research. To see a listing of current fund raising events click here
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