EUROPEAN HUNTINGTON ASSOCIATION

We are an umbrella organization for Huntington’s Disease (HD) associations from 32 countries.

  • Connect HD affected all over Europe
  • Raise awareness
  • Inform
  • Support research

EHA Board elected October 2022

OUR LATEST NEWS

Prilenia and Ferrer Partner to Advance Pridopidine in Europe and Other Select Markets

On April 28, 2025, Prilenia Therapeutics B.V., a biopharmaceutical company focused on neurodegenerative diseases, announced a collaboration and license agreement with Ferrer, a Spanish pharmaceutical company.

This partnership aims to commercialize and further develop pridopidine in Europe and other select regions.

uniQure’s Gene Therapy for Huntington’s Disease Receives Special FDA Designation

The U.S. FDA has granted a special designation to AMT-130, uniQure’s investigational gene therapy for Huntington’s disease.

This recognition highlights encouraging early results and offers a faster path toward potential approval. Learn more about what this means for the HD community.

Roche has provided an interim update on the Phase II GENERATION HD2 clinical trial.

Following a review by an independent data monitoring committee, the study will continue with a focus on the 100mg dose, as it showed greater potential for clinical benefit compared to the 60mg dose, which will be discontinued. 

The trial remains blinded and is expected to conclude in 2026.

Registration is now open for the 2025 EHA Conference

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!

What are Health Technology Assessments and why do they matter? Understanding the path to access to therapies

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.

Join the European Huntington Association’s Teaming Initiative

Teaming is an online crowdfunding platform that enables people to support meaningful causes with just 1 per month.
 
For the EHA, this means more resources to fund important projects, raise awareness and provide support to the Huntington’s community across Europe.
 
🫂 Even the smallest contributions have the power to create meaningful change. Let’s work together to bring hope, care, and change to the Huntington’s community.  Together, we get stronger!

🙏 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.

Join the European Huntington Association’s Teaming Initiative

Teaming is an online crowdfunding platform that enables people to support meaningful causes with just 1 per month.
 
For the EHA, this means more resources to fund important projects, raise awareness and provide support to the Huntington’s community across Europe.
 
🫂 Even the smallest contributions have the power to create meaningful change. Let’s work together to bring hope, care, and change to the Huntington’s community.  Together, we get stronger!

Webinar: Research Insights: Latest Updates on Ongoing Studies​

🗓️ 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. 

Join the European Huntington Association’s Teaming Initiative

Teaming is an online crowdfunding platform that enables people to support meaningful causes with just 1 per month.
 
For the EHA, this means more resources to fund important projects, raise awareness and provide support to the Huntington’s community across Europe.
 
🫂 Even the smallest contributions have the power to create meaningful change. Let’s work together to bring hope, care, and change to the Huntington’s community.  Together, we get stronger!

Webinar: Research Insights: Latest Updates on Ongoing Studies​

🗓️ 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!

Let’s move together for Huntington Dance

🕺 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

Check out our Online Resources

Get Active!

Together with physiotherapists, we have developed a resource to help you live an active life.

nutrition

Read our book on nutrition problems and solutions for to Huntington families, caregivers and medical staff.

Sleep

Do you have trouble sleeping? Get simple tips on how to improve sleep here.

Oral care

Keeping the mouth healthy is extremely important for people affected by Huntington's disease.

online training

An online free course about Huntington’s Disease (HD) and how to provide the best care.

Ask the doctor

Do you have any questions about Huntington's disease? Ask our doctor!

LEARN MORE ABOUT OUR INTERNATIONAL PROJECTS

Moving Forward

This project wants to hear and engage those traditionally less involved in Huntington Disease research.

HD Trial Finder

An European platform where all Huntington’s disease trials are presented in plain language.

HD-CAB

A global initiative to represent the voice of the global HD community.

HealthE-RND

An online eHealth platform to improve the quality of life for those of us affected by rare diseases

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