We are an umbrella organization for Huntington’s Disease (HD) associations from 32 countries.
EHA Board elected April 2025
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 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.
During our visit to Sweden for our annual meeting, the EHA Team had the opportunity to go to Lund to meet with Professor Åsa Petersén, a psychiatrist, researcher, head of the HD Center, and Deputy Chief of the EHDN, as well as Camilla Svensson, a registered nurse. They both work at the HD Clinic at Skåne University Hospital (SUS) in Lund.
The EHA team left the visit inspired to continue advocating for multidisciplinary teams and effective strategies that ensure the HD community is well taken care of.
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
