Jaká je 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

European Huntington Association

Domů
Česko
Prague
European Huntington Association

Trasa Web Kontaktovat organizace

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:

15/10/2026

Neurological conditions have been left behind for far too long and it’s time to prioritise them.

The European Parliament is preparing a report calling for a European Neurological Health Strategy. Usually, new EU policy starts with the European Commission. This time, Parliament started it itself, which gives us a real chance to put neurological health on Europe’s agenda.

That's why, our President Astri Arnesen was in Brussels this week, representing the European Federation of Neurological Associations.

Astri met MEP Catarina Martins, who is writing the report, and MEP Sirpa Pietikäinen, who follows it for the EPP, the largest political group in Parliament.

EFNA handed over its key asks for the strategy:

✅ Fair access to diagnosis, treatment and rehabilitation, wherever people live in Europe
✅ Coordinated care, with psychological support and real help for families and carers, including young carers
✅ Research shaped by what people living with neurological conditions say they need
✅ Success measured by whether people’s needs are actually met, not by whether a service exists on paper
✅ No condition left behind, including rare conditions like Huntington’s disease

This matters for the HD community.
A strategy built on these principles would make a real difference to the people living with it and to those who care for them.

The report is still being drafted, and we will follow every step and keep you informed.

Thank you to both MEPs for listening.

08/10/2026

In 2019, a small pill for Huntingtons Disease sounded almost too good to be true.

Today, that pill, now called votoplam, is being tested in a global Phase 3 trial. INVEST-HD already has 117 sites open in 27 countries, including countries where families have rarely, if ever, had the chance to take part in HD research.

That is a reason for a little optimism. But promising is not the same as proven: the trial will run for about three years before we know if votoplam can slow HD.

In our new article, we explain the whole journey: from where the idea came from to how the pill works.

Read it here: https://hdtrialfinder.net/en/full-throttle-ahead/

06/10/2026

Kraków, here we come! 🇵🇱

In two weeks, the European Huntington Association will join researchers, clinicians and fellow advocates at the EHDN Clinical Research Congress 2026 in Kraków (22-24 October).

Bringing the voice of the Huntington's disease community into research is at the heart of our work. This year, we're doing it alongside our international partners in a joint session:

A Collaboration of Global Advocacy:
Presented by HDYO, EHA and IHA
Friday 23 October, 13:15–14:15
Chaired by Jenna Heilman, Astri Arnesen and Svein Olaf Olsen

2026 also marks EHA's 40th anniversary! For four decades, we have connected national associations and families across Europe, and we'll be celebrating that milestone at our booth throughout the congress. So, come say hello, meet our team and discover the surprises we've prepared!

See you there! 👋

30/09/2026

Forty years ago, in 1986, families living with Huntington's disease started looking for each other across Europe.

Back then, that meant letters, phone calls and a handful of people willing to travel to meet strangers who understood exactly what they were going through. There was very little information available, and even less space to talk openly about HD.

Four decades later, that search has become a community: member associations in countries across Europe, families who support each other, professionals and researchers who keep pushing the science forward. Every meeting, every conversation someone had the courage to start, it all added up to this.

To everyone who has been part of these 40 years: thank you. We built this together.

And the next 40 years start today. 💚

29/09/2026

🚨 uniQure has shared new data from its ongoing Phase I/II studies of AMT-130, showing continued slowing of disease progression.

In this short video, Astri explains what these new results mean and why these findings are exciting news for the HD community. 🧬

There is still more to learn, and these are investigational results, but seeing the effects of the treatment continue over time is certainly encouraging.

🔗 Read the full press release to learn more: https://uniqure.gcs-web.com/node/13001/pdf

28/09/2026

That's a wrap on the EFNA Conference 2026! 🇮🇪

Two days in Dublin with neurology patient organisations from across Europe reminded us that there is much more that unites us than divides us. Whatever the diagnosis, country or background, families affected by a neurological disease face a burden and unmet needs that are real, and challenges that look remarkably similar.

It was also a reminder of how much good work patient organisations are already doing, and how much stronger we are when we bring it together.

The discussions covered access to care, health technology assessment, patient involvement in research and policymaking, and stigma.
On day two, our Board member Derek Readman joined the panel "Challenging Stigma: Building Understanding and Driving Change", on how stigma affects people with neurological conditions and their families, and how we can challenge misconceptions and change attitudes.

We're coming home with new connections, a stronger sense of belonging to a wider community, and a lot of energy and optimism for what we can achieve together, starting with a European strategy for neurological health.

Thank you, , for bringing us together. 💚

25/09/2026

Greetings from Dublin! 👋

Our team is at the Conference 2026, where neurology patient groups from all over Europe have come together to talk about what matters most: faster diagnosis, fair access to care, and ending the stigma so many families still carry.

Day one was full: from a look at where neurology stands today and what comes next, to how patients' own knowledge can shape policy, and what living well with a neurological condition really takes. Tomorrow, we're back for day two.

We're here to make sure the Huntington's disease community has a seat at the table. Stronger together! 💚

23/09/2026

30 years ago, a few families in Belgium faced Huntington's disease with no support nearby. So they created it themselves. 💙

This month, the Ligue Huntington Francophone Belge celebrated 30 years of standing by families across Brussels, and EHA was there to celebrate with them.

A farmhouse turned into a cosy venue, stories from the founders, quizzes and fortune cookies… and a community that keeps growing.

Félicitations to the whole Ligue team! 🎉

👉 Read the full story here: https://eurohuntington.org/2026/09/23/30-years-of-the-ligue-huntington-francophone-belge/

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

Web

http://www.eurohuntington.org/

Upozornění

Buďte informováni jako první: pošleme vám e-mail, když European Huntington Association zveřejní novinky a akce. Vaši e-mailovou adresu nepoužijeme k žádnému jinému účelu a odběr můžete kdykoli zrušit.