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European Huntington Association

Domů
česko
Prague
European Huntington Association

The European Huntington Association (EHA) is an umbrella organization formed by Huntington’s disease (HD) associations all over Europe.

We represent more than 30.000 individual members. Instagram:

11/08/2026

“In families, we think that by not telling the children, we’re protecting them. But when they find out, the blow is much harder.”

These are the words of a mother in our community who cared for her husband, and now her son, through Huntington’s Disease. For years, like in many families, it was a subject no one named.

But silence rarely protects. Talking openly - gently, honestly, in your own time - is often what helps families most. Whatever stage you’re at, you don’t have to carry it in silence. 💚

07/08/2026

While summer is still with us, we're already looking ahead to a full autumn for the Huntington's Disease community.

👉 The EFNA Conference in Dublin (25–26 September), bringing together neurology patients, organisations, clinicians and researchers to shape a more inclusive neurology landscape;

👉 The EHDN Clinical Research Congress in Krakow (22–24 October), with its strong focus on ongoing and upcoming HD clinical trials.

Take a moment to look ahead and save the dates:

🔗 eurohuntington.org/events

04/08/2026

85% of clinical trials face delays. ⏳

Not because of funding, not because of science. Because they can't find enough participants.

Every delay means people living with Huntington's Disease wait longer for better treatments. But this is one part of research where you can make a direct difference.

Every participant moves HD research forward. 💙

👉 See studies recruiting near you: hdtrialfinder.net

28/07/2026

"But I wouldn't know where to start." It's the thing we hear most from people who want to help. 💚

So here's a place to start: our EHA Conference 2027. Our conferences aren't just events to attend, they're built and shaped by the people who show up.
You could help with logistics, volunteer on the day, share your story in a session, or bring your professional skills as a speaker.

📩 Curious? Contact us to know more by DM or by sending an email to: [email protected]

24/07/2026

Say hello to Bruna! 👋

We're delighted to welcome Bruna Costa to the EHA team as our new Communications Advisor, based in Lisbon alongside our communications team.

In her own words: "I'm so happy to join a team with such a strong purpose. I get to put what I know into practice for a cause that truly matters, and the community I've already met has touched me deeply."

Welcome, Bruna. We're stronger together. 💚

21/07/2026

For 26 years she has been a caregiver. First for her husband, now for her son. She knows how heavy this disease can be.

"With HD, it's easier to turn a deaf ear. To not talk about it. To look the other way."

Easier, maybe — but it's not the path we choose. We choose to speak, to listen, and to stand together.

The silence ends here. 💚

16/07/2026

Finding an HD clinical trial shouldn't feel like decoding a research paper. 🧩

HDTrialFinder is the first and only European platform that brings together all Huntington's Disease trials and studies, explained in plain language. A clear overview of research opportunities near you.

Built by the European Huntington Association: for us, by us. 💙

👉 Find a study near you: hdtrialfinder.net

14/07/2026

Last week, our community received difficult news with the discontinuation of two Huntington’s disease research programmes. But while research continues to build tomorrow's treatments, there is something important we can do today: take care of our health.

affects much more than the brain. It can also impact our muscles, metabolism, sleep, heart, digestion, mood, and many other aspects of our health.

Staying active, looking after our physical and emotional wellbeing, and receiving holistic care can improve our quality of life today and help us face the future in the best possible condition, as new therapeutic opportunities continue to emerge.

Because the future of Huntington’s disease is built from many different directions: , healthcare professionals, families, the community… and also through the care we give ourselves every day.

🎥 If you haven’t yet watched our webinar "Huntington’s Disease Affects Much More Than the Brain", featuring Prof. Zacharias Kohl and Dr Marta Tomczyk, we invite you to discover why Huntington’s disease is now recognised as a multisystem disorder—and how understanding this can help us provide better, more holistic care.

📖 Read the article and watch the full webinar:
🔗https://eurohuntington.org/2026/07/13/hd-much-more-than-a-movement-disorder/

If you haven’t yet caught up with last week’s research updates, you can also read our latest articles:

🔹 When a Clinical Trial Ends, Hope Doesn't - An update on Roche https://eurohuntington.org/2026/07/09/when-a-clinical-trial-ends-hope-doesnt/

🔹 PRECISE-HD: A New Step Forward for Huntington's Disease Research - An update on Ferrer & Prilenia https://eurohuntington.org/2026/07/07/precise-hd/

09/07/2026

Today is a difficult day for our community.

Roche 's discontinuation of two clinical trials is disappointing for everyone who has followed these studies, participated in them or hoped they might lead to new treatment options.

In our latest article, we take a closer look at what today's announcement means, why these decisions were made, and how this fits into the broader picture of HD research.

Above all, we want to recognise the extraordinary contribution of every person, family and professional who made these studies possible. Every —whatever the outcome—helps move research forward.

When a Clinical Trial Ends, Hope Doesn't.

Read the full article here: https://eurohuntington.org/2026/07/09/when-a-clinical-trial-ends-hope-doesnt/

08/07/2026

The AMT-130 Story, and What the June 2026 Announcement Means for Our Community 🧬

After 8 years of ups, downs, and a community that never stopped advocating, the FDA and uniQure reached an agreement that could open the door to accelerated approval.

There's still a way to go, but this is a very meaningful step for the HD community.

Read the full journey to learn more👉https://hdtrialfinder.net/en/a-rollercoaster-ride-to-hope/

Adresa

Prague

Otevírací doba

Pondělí	09:00 - 16:00
Úterý	08:00 - 19:00
Středa	08:00 - 16:00
Čtvrtek	08:00 - 16:00
Pátek	08:00 - 16:00

Internetová stránka

http://www.eurohuntington.org/

Upozornění

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