We are an umbrella organization for Huntington’s Disease (HD) associations from 32 countries.
EHA Board elected October 2022
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.
This year, we’re launching a special May Awareness Month Calendar — 31 days of small actions, reflections, and learning opportunities that anyone can take part in. Whether you’re part of the HD community or simply want to learn more and show support, this is your invitation to get involved.
You can follow the calendar daily, pick your favorite ideas to share on social media, or come back throughout the month when you need a dose of hope, inspiration, or community.
Health technologies include medications, devices, and systems designed to address health problems, improve health outcomes, and enhance the quality of care.
For HD, health technologies include potential therapies that, if developed, could profoundly impact patients’ lives.
But, in case a therapy is developed, how do governments decide which health technologies are worth adopting? This is where Health Technology Assessments (HTAs) come in.
Registration is now open for its 5th Biennial Conference, which will take place in Bucharest (Romania) from 25 to 28 September 2025.
The event is aimed at family members, healthcare professionals, friends, volunteers and anyone else involved in the HD community.
To secure your place and for more information, visit our dedicated web section and take advantage of the early bird and under 30s rates. Don’t miss this key event!
🙏 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
