perjantai 1. lokakuuta 2021
HDYO:lla on lisätietoa Huntingtonin taudista tarjolla nuorille, vanhemmille ja ammattilaisille sivullamme:
General Huntington's Disease Websites
- HOPES - Huntington's Outreach Project for Education at Stanford - A great site from a group of students at Stanford University, America. This site is full of information about Huntington’s disease, and some cool stuff for kids too.
- HD Message Board - a message board for people whose lives are affected by Huntington’s disease and wish to share their experiences with others.
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.
- 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
- 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.
- SHAYP Resources - Fact sheets from the Scottish HDA.
- Wikipedia: Huntington's disease - Wikipedia page on HD.
- JHD Resources - Links and resources for information on Juvenile Onset Huntington's Disease.
- Local Resources - Find your local support group or association wherever you are in the world.