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Links

2021年10月01日

Huntington's Disease Youth Organization

HDYO通过以下网站为年轻人、父母和专业人员提供有关亨廷顿氏病的广泛信息:

www.hdyo.org

General Huntington's Disease Websites

Huntington's Disease Research

  • HDBuzz - A website for people from families affected by Huntington’s disease to learn about the latest research in an easy, understandable manner.
  • Enroll-HD - The official website for Enroll HD, a worldwide research study that almost everybody from a family affected by Huntington’s disease can join and participate in.

Youth Websites

  • YPAHD - The Huntington’s Society of Canada’s official youth group, where Canadian youth can join up and receive support.
  • NYA - The Huntington’s Disease Society of America’s official youth group, where American youth can join up and receive support.
  • Scottish Huntington's Assoication - Youth - The Scottish HDA’s youth website.

Huntington's Disease Associations & Organisations

Discuss

  • CHDI - The Cure Huntington’s Disease Initiative. They are a not-for-profit research organization devoted to developing drugs that will slow the progression of Huntington’s disease.
  • EHDN - The Euro-HD Network website, with lots of information about research studies and study sites throughout Europe.
  • FACTOR-H - involves people coming coming together to help people affected by Huntington’s disease and living in conditions of extreme vulnerability.
  • IHA - The International Huntington’s Association’s website. A worldwide organisation that provides support to Huntington’s Disease Associations.
  • Hereditary Disease Foundation - The Huntington’s Disease Foundation have been supporting Huntington’s disease research for many, many years.
  • HSG - HSG: The Huntington's Study Group is a global research group for HD made up of professionals and clinics around the world who conduct studies and trials for HD.

Resources

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儿童 青少年 青年 父母和家庭 青年发病的亨廷顿舞蹈症 Friends 专业人士