We are an umbrella organization for Huntington’s Disease (HD) associations from 32 countries.
EHA Board elected April 2025
HD) is a complex neurological condition that evolves over time, affecting movement, cognition, and behaviour.
With this in mind, the Neurology and HD course was created to equip both formal and informal caregivers with the knowledge and practical tools needed to support individuals throughout the entire disease journey.
The European Huntington Association (EHA) and the International Huntington Association (IHA) are joining forces again, launching a joint global campaign this May to mark Huntington’s Disease Awareness Month, under the theme “More Than HD – Be Part of It.”
Check it out in this article!
The update comes from an ongoing Long-Term Extension (LTE) study, which includes participants who previously completed the PIVOT-HD study. By continuing treatment over a longer period, researchers are able to better understand how votoplam performs over time in terms of both safety and potential benefit.
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.
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
