We are an umbrella organization for Huntington’s Disease (HD) associations from 32 countries.
EHA Board elected April 2025
Árni Gautur Arason, the former international goalkeeper chose to speak out about living with HD’s disease, helping to break stigma and remind us that the answer should never be silence.
Watch him return to the field in Norway and hear his story. The silence ends here.
The importance of mental health is increasingly recognized, and investing in therapy has become a common and necessary practice. For individuals living with Huntington’s Disease (HD), psychological support is especially crucial – not only for them, but also for their families, friends, and caregivers.
In the Psychology and Huntington’s Disease course, available through the Huntington Academy, you can learn how psychological support can help individuals with HD, as well as their families and caregivers.
The IDEA-FAST project is a research study across Europe that is looking at how digital tools can help track and better understand some symptoms in
everyday life in several diseases.
By sharing your experience, you can help researchers and healthcare professionals
understand how to use these technologies to improve diagnosis, monitoring, and overall quality of life.
The survey will close on April 30, 2026.
UniQure announced that the US authorities (FDA) require the company to collect more data before they can ask for market approval for the gene therapy AMT 130.
Read Astri’s words about these news.
Communication is more than exchanging words, it’s about connection, safety, understanding, respect, and emotional support.
That’s why the Communication Skills in HD Care course, available through the Huntington Academy, breaks down what effective communication really looks like across disease stages, between caregivers and care teams, and within families.
HRN001 is an experimental treatment being developed by Harness Therapeutics for people with Huntington’s disease.
HRN001 is still in early (preclinical) development and has not yet been tested in people. More research is needed before its safety or effectiveness can be determined. Harness Therapeutics plans to continue preclinical work with the goal of moving toward clinical studies in 2027.
Super exciting news for the HD community: Novartis´s announcement of the new the global Phase 3 trial for Votoplam will be called INVEST-HD.
The trial will test how well Votoplam works and the safety in a larger group of participants. This is the next step in the previously investigated Phase 2 PIVOT-HD trial.
Dr Sarah Gunn (a Lecturer in Clinical Psychology at the University of Leicester, UK, and a clinical psychologist) has been working with people affected by Huntington’s disease for around 13 years.
She has developed therapeutic interventions tailored for people affected by Huntington’s, which are showing positive outcomes for people who carry the gene expansion and for their caregivers.
In this third article, we turn to one of the most decisive and controversial components of HTAs: economic evidence, which primarily compares the benefits of a treatment with its associated costs.
There are different models used across European countries to perform HTAs. These models establish a framework that shapes whether, when, and how much weight the types of evidence (clinical, economic, and others) are given.
President Astri Arnesen attended the Orphan Drug Conference in Amsterdam to discuss how the new regulations on EU Joint Clinical Assessments (JCAs) can be a tool to ensure faster and equitable access to new therapies for Rare Diseases (RD).
Here is the choreography created by Coco Style Spain to raise awareness for Huntington’s Disease worldwide by dancing to Katy Perry’s song Fireworks.
You can now start rehearsing the steps to publish your video during #MayAwarenessMonth as part of the Huntington Dance initiative and remember to tag us on Facebook and Instagram and use the hashtag #HuntingtonDance
Together with physiotherapists, we have developed a resource to help you live an active life.
Read our book on nutrition problems and solutions for to Huntington families, caregivers and medical staff.
Do you have trouble sleeping? Get simple tips on how to improve sleep here.
Keeping the mouth healthy is extremely important for people affected by Huntington's disease.
An online free course about Huntington’s Disease (HD) and how to provide the best care.
Do you have any questions about Huntington's disease? Ask our doctor!
This project wants to hear and engage those traditionally less involved in Huntington Disease research.
An European platform where all Huntington’s disease trials are presented in plain language.
A global initiative to represent the voice of the global HD community.
An online eHealth platform to improve the quality of life for those of us affected by rare diseases
To learn more about our projects, events and other activities related to huntington disease and our big community
