Everyone can help in the fight to cure Huntington’s disease. Join the cause by staying informed, participating in research or becoming an advocate for those with Huntington´s disease and their families.
Below is more information on how you take action!
PARTICIPATE IN RESEARCH
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 treatment for Huntington´s Disease (HD). The HDTrialFinder offers you an overview of research opportunities near you.
Few people spend time thinking about clinical research (studies conducted with humans) prior to a Huntington´s diagnosis. Nonetheless, this is an area of tremendous opportunity for anyone living with Huntington´s disease (HD) to help accelerate the development of treatment breakthroughs.
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 and 30 per cent never even get off the ground because of the chronic shortage of volunteers. This dramatically slows research progress, which means patients wait longer for better solutions to manage their disease.
It has never been easier to find relevant studies. HDTrialFinder is a user-friendly online tool that offers an overview of studies on Huntington’s disease near you, with detailed information about recruitment and whom to contact.
JOIN THE HUNTINGTON 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, 2019.