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The information contained in the Organizational Database (ODB) is provided for informational purposes only. There is no implied endorsement by NORD. NORD does not promote or endorse participation in any specific organization. The information is subject to change without notice. Every effort is made to ensure that the details for each entry are as current as possible.


International Huntington Association


Address

Callunahof 8
7217 ST
Harfsen, 7217 ST The Netherlands

Phone

31573431595

Fax

31573431719

Email Address

iha@huntington-assoc.com

Description

The International Huntington Association (IHA) is a multinational federation of 32 member agencies that share common concern for individuals diagnosed with Huntington's disease and their families. Member agencies promote health consumer and medical professional educational initiatives; individual and family support; psychosocial, clinical, and biomedical research; and ethical and legal considerations related to Huntington's disease in their respective countries. Huntington's disease (HD) is an inherited degenerative brain disorder characterized by irregular, involuntary movements (chorea); abnormal gait (ataxia); slurred speech (dysarthria); and progressive disorientation and loss of intellectual function (dementia). Established in 1974, the organization's primary goals include promoting international collaboration in the search for a cure for HD; maintaining close liaison with research scientists who form the Research Group on Huntington's Disease of the World Federation of Neurology; developing new educational materials and resources as well as sharing these resources with member countries; assisting in the organization of new national HD groups and development of existing organizations; and publishing an international newsletter that is distributed to all members and to representatives in those countries where no HD group is yet organized. Educational materials are provided in a variety of languages including German, Dutch, French, Spanish, Norwegian, Danish, and Portuguese.

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