TAKE ACTION
Everyone can do their part in helping to change the outcome/path of Huntington’s Disease(HD). Join the European Community by staying informed, participating in research or becoming an advocate for those with HD and their families.
Below is more information on how you take action!
Charlotte participating in the Young Adult Study. Showing us her HD liquid gold. Cerebral spinal fluid
When you join a study, you give something money can’t buy!
Participating in research may be something you haven`t considered to do. But taking part in studies is a valuable and high-impact opportunity for patients and families to help accelerate breakthroughs in treatments for HD. The HDTrialFinder offers you an overview of research opportunities near you.
People may not spend much time thinking about clinical research (studies conducted with humans) prior to a HD diagnosis. Nonetheless, this is an area of tremendous opportunity for any families living with HD. There opportunities are for all: healthy volunteers, premanifest, manifest, and at risk. Each study and trial is different and requires different groups.
Funding and other resources can’t make up for a lack of study participants (a common issue for clinical trial coordinators). Across all research, 85 per cent of trials face delays . This dramatically slows research progress, which means patients wait longer for better solutions to manage their disease. Ou
It has never been easier to find relevant studies. HDTrialFinder is a user-friendly online tool that offers an overview of studies on HD near you, one click a of a button, with detailed information about recruitment and whom to contact.
BECOME A HUNTINGTONIAN
HUNTINGTONIAN: a term coined by a family member. Being part of a large international HD community
Another way to take action is to join our Huntington family. You can do this by getting in touch with your local association or the European Huntington Association.
Many of the local associations organize for people to meet and talk about Huntington’s Disease. In addition, they often host seminars and conferences. This can be a good way to learn more about the disease and get to know other people in the Huntington community.
People attending ‘HD on the MOVE’ during European Huntington Association’s conference in Bucharest, 2025.
