European Huntington Association

13/05/2026

May is Huntington’s Disease Awareness Month. 💜

This month, we come together to increase understanding of Huntington’s Disease, a rare inherited condition that affects movement, thinking, and emotions. Behind every diagnosis is a person, a family, and a story that is .

Awareness matters. It helps reduce stigma, strengthens support for families, and drives progress in research toward better treatments and, one day, a cure.

Throughout May, we will be sharing facts, stories, and resources to help more people understand Huntington’s Disease and the impact it has on families around the world.

11/05/2026

11/05/2026

🇸🇰 Last week, Filipa was “on the road” across Slovakia alongside our dear colleague and EHA Board Member, Vladimir Vaclavik, who is also the President of the Slovak Huntington Association.

As a part of the HD-R-Ready project, they were on a double mission: to visit the country’s three HD centres and learn more about the care and research landscape, while also presenting the project at the Slovak Association Conference in Bratislava.

What stood out most was the remarkable openness, availability, and collaborative spirit of the clinical teams, as well as the strong and respectful partnerships they have built with families.

These moments remind us that our greatest strength lies in collaboration: in the relationships we build, the knowledge we share, and what we can achieve together for the future of HD families across Europe. 💜💙

We would like to thank the Slovak HD community for their warm welcome and collaboration.

Stay up to date with the latest news and learn more about the project here: https://eurohuntington.org/hd-r-ready/

08/05/2026

"You can spend the whole day at work feeling like everyone else, and then you walk through your front door and remember that very little in your life is actually 'normal'."

This is Claudia, from Italy. She lives with Huntington's disease, a rare, inherited condition that affects movement, thinking, and emotion. But before any of that, she is a person. A colleague, a friend, part of a family.

Claudia describes living with HD as a roller coaster she never chose to be in. Some days are quiet. Others, a small thing (a dropped object, a forgotten word) sends the ride downhill again.

And yet, the part of her story she wants to highlight is this: the strength of HD families is the way they show up for each other. Endless. Non-judgmental. Sometimes a shared story, sometimes just listening in silence.

HD changes everything. And it gives people a bigger family to face it with.

Thank you, Claudia, for trusting us with your words. 💚

This May, we're sharing the people behind the diagnosis. More than HD.

06/05/2026

🇸🇰 This week, we're heading to Slovakia!

We're visiting clinical centres in Zvolen, Košice and Bratislava to meet the teams supporting HD families, and we'll be joining the Slovak HD Association national conference to present the HD-R-Ready project.

HD-R-Ready is all about making HD research more accessible, feasible and family-friendly. We can't wait to share what we've learned, and to hear directly from the Slovak HD community about their experiences and needs.

Want to join? The conference is open in-person and online👇

📋 Register here: https://docs.google.com/forms/d/e/1FAIpQLSd-jMeZmwnAwmEI5OL_HxHmKhuEda7KLWFA6cj2jvD5amWNQg/viewform

To read more info: https://eurohuntington.org/hd-r-ready/

01/05/2026

As there are many invisible symptoms happening in the brain, it is harder for individuals with HD and for their caregivers and families, to manage them.

💬 Gaining the right knowledge is the key to navigate these challanges with confidence and provide the best possible support.

The Neurology and Huntington’s Disease course, available on the Huntington Academy, helps you better understand the neurological aspects of HD and how to respond to its evolving challenges with empathy, flexibility, and informed decision-making.

🌎 All courses are available in English, Spanish, French, and Bulgarian
👉 Read the full article and discover the Huntington Academy: https://eurohuntington.org/2026/04/30/understanding-what-happens-inside-the-brain-in-huntingtons-disease/

30/04/2026

📢 Spread the word! Moving Forward is hosting a Swedish-language online session on HD genetic testing, featuring a genetic counsellor and two young adults sharing their stories. There will be space for your questions too. 💬

🗓️ May 5th | 18:00 CET
➡️ Sign up: https://us02web.zoom.us/meeting/register/H3LGwU6hRw-89rl4PI0h9A

30/04/2026

Encouraging news for the HD community! uniQure has announced that UK regulators are positive to review data from the AMT-130 therapy for potential market access. This follows the promising study results presented last September.

“This is very exciting”, says EHA President Astri Arnesen, “For the HD community this is a good day!” While we remain cautious as the evaluation continues, this is an important and hopeful step forward.

Read the full article to learn more ➡️ https://eurohuntington.org/2026/04/30/uk-regulators-positive-to-evaluate-huntington-treatment/

Read the press release ➡️ https://uniqure.gcs-web.com/node/12636/pdf

17/04/2026

Our board and team are gathered in Amsterdam today to organize our strategy and advocacy plans, and to begin preparations for next year's EHA Conference.

Important conversations happening right now that will shape our work ahead. ☺️

17/04/2026

With all the nutritional challenges HD brings to individuals, it is essential to adapt the way meals are prepared and consumed. But here creativity is the key!

It’s important to keep meals as close as possible to what the person is used to, maintaining a sense of familiarity and keeping meals enjoyable. In this way, the process of making dietary changes is smoother and can make a big difference in both nutrition and quality of life 🫂

Learn more in our Nutrition and HD course, which explores how tailored dietary strategies can help manage these challenges and improve everyday care: https://huntington-academy.org/welcome-to-the-nutrition-and-hd-course

🌍 All courses are available in English, Spanish, French, and Bulgarian