We are an umbrella organization for Huntington’s Disease (HD) associations from 32 countries.
EHA Board elected April 2025
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.
The HD Academy brings together the expertise of experienced professionals and the lived experiences of HD families to provide free, clear, accessible, and practical education — all in one place.
One of the nine available courses is What is Huntington’s Disease? (HD Basics), which aims to guide learners through the essential concepts needed to understand HD.
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).
In this article about SOM3355, Astri Arnesen and Dina de Sousa explain what happened in the clinical trial, what’s next for the Phase 3 clinical trial, and what SOM Biotech has to say about this important step toward a potential new treatment for Huntington’s disease.
In September 24th, the company UniQure announced the results of its clinical trial after 36 months with AMT-130, a gene therapy for Huntington’s disease (HD).
In this article, we break down this information, explaining what the data shows, why it matters, and what they could mean for the future of Huntington’s disease research.
In this heartfelt testimony, Javier Lafuente shares how attending an EHA conference changed his life.
He describes finding a community that truly understood his experience as a carer, where he felt heard and seen, and explains why others in similar situations should consider attending the next EHA conference in September.
The European Huntington Association (EHA) recently reinforced its dedication to patient advocacy through active participation in two key EURORDIS events: the EURORDIS Membership Meeting 2025 in Riga, Latvia, and the EURORDIS Open School 2025 in Barcelona, Spain.
It was a unique opportunity to expand her knowledge, share inspiring experiences, and connect with other members of the global rare disease community.
In our previous article about Health Technology Assessments (HTAs), we explained what HTAs are and why they matter. If you haven’t had the chance to read it, we suggest you take a look and then come back here, since there is valuable information there too.
In today’s article, we want to take a deeper dive into the topic of HTAs and their importance for the HD community.
Astri Arnesen and Dina de Sousa take a closer look at PTC Therapeutics’ press release, highlighting what the latest updates mean for people affected by Huntington’s disease. In this video, they explain the main findings in a way that’s easy to follow and emphasize why this development brings hope to the community. It’s a great starting point for understanding the news — and we encourage everyone to read the full press release for all the scientific details.
🙏 The solidarity project led by the EHA through its Moving Forward initiative, in collaboration with ACHE, has closed 2024 with outstanding results.
📚 With over 270 copies sold, “Chronicle of a Fortune Foretold” has become a key tool in raising awareness about HD and generating funds to support families affected by this neurodegenerative condition.
💜 The book, available in a bilingual edition (English and Spanish), combines a poignant story with original illustrations by Paloma Agüera.
🗓️ On October 23rd, the European Huntington Association held an engaging and informative webinar titled “Research Insights: Latest Updates on Ongoing Studies.”
The webinar provided a comprehensive overview of the latest developments in clinical trials, with each company sharing updates and preliminary insights from their ongoing or completed studies in HD treatment.
These presentations underscored the diversity of approaches and the progress being made across therapeutic areas.
🗓️ On October 23rd, the European Huntington Association held an engaging and informative webinar titled “Research Insights: Latest Updates on Ongoing Studies.”
The webinar provided a comprehensive overview of the latest developments in clinical trials, with each company sharing updates and preliminary insights from their ongoing or completed studies in HD treatment.
These presentations underscored the diversity of approaches and the progress being made across therapeutic areas.
🧠 While the scientific community keeps working to develop pharmacological treatments, it is important that we focus on improving quality of life and adopting habits that are beneficial for our health.
💪 Physical activity is an important component of a healthy lifestyle. There are good reasons to believe exercise might be helpful in HD.
➡️ Read the complete article to find out the the benefits of physical activity and available resources to get started!
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
