European Huntington Association

Thinking about getting involved in the HD community but not sure how to start?
Here's the short version:

→ Find your national HD association
→ Send them a message, introduce yourself
→ Start with something small and see how it feels

That's really it. No experience required, no minimum hours, just a willingness to be part of something bigger than yourself.

Want to hear from people who've done it? Read their stories here: https://eurohuntington.org/2026/06/02/what-does-volunteering-for-the-hd-community-actually-look-like/ 💙

Three people. Three countries. One thing in common: they chose to get involved in the HD community and it changed how they experience this disease.

Meet three of the people who shared their volunteering stories at our 'Get Involved' webinar:

🇺🇸 Sai Ganti (USA) started his journey with small acts of connection, from shovelling driveways to raising funds with HD-themed cookies. For Sai, volunteering has been about turning personal experience into community purpose.

🇫🇮 Saija Ristolainen-Kotimäki (Finland) has given over a decade to the HD community. From board member to chairwoman of the Finnish Huntington Association, to Treasurer of EHA itself. She is also an expert by experience, bringing the perspective of a family member into every room she enters.

🇩🇪 Alexa Mollicchi Casanova (French-American, based in Germany) volunteers for Association Huntington France. For Alexa, getting involved has meant being part of something larger: HD IRL, in real life, with real people.

Their paths are different. Their reason for being here is the same. 💙

Read their full stories here: https://eurohuntington.org/2026/06/02/what-does-volunteering-for-the-hd-community-actually-look-like/

EHA was proud to be represented at in Prague by Filipa and Ruth, who presented the Huntington Academy platform at the EURORDIS-Rare Diseases Europe poster pitch session and posters speed dating.

The feedback received from the rare disease community has been incredibly encouraging, and we are honoured to share that our pitch was voted one of the most impactful of the session.

We extend our sincere thanks to EURORDIS Rare Diseases Europe for the opportunity to showcase our work, and to all those who engaged with us in Prague. Your support reinforces our commitment to improving education and resources for the Huntington's disease community.

🧠 Last week, as part of HD Awareness Month, Astri visited the Novartis Pavilion in Basel, an experience that was both humbling and deeply hopeful. The exhibition tracing the history of medical knowledge about the human body was a powerful reminder of how far science has come and how much is at stake for the HD community as we look towards the future of drug development.

Astri was also invited to take part in a panel discussion alongside Dr. Marcus D'Souza from University Hospital Basel, Annette Rentsch, an HD family member, and Dr. Amit Khanna, Global Program Head for Huntington's Disease at Novartis.

We would like to thank the Novartis team for this opportunity.

📢 Reminder: Novartis INVEST-HD Trial Webinar

Join us tomorrow for an open webinar with Novartis to get the latest updates on the INVEST-HD trial, including timeline updates and insights from a clinical perspective.

🗓 June 2nd
🕕 6:00 PM CET

Presentations by:
🔹 Beth Borowsky, PhD — Senior Global Programme Clinical Head in Neuroscience at Novartis
🔹 Asa Petersen, MD PhD — Lund University
Followed by a Q&A moderated by Astri Arnesen.

We hope to see you there! 👇
🔗 https://us02web.zoom.us/meeting/register/xkazqsVaS1KVkG6lXkfmGQ

Please welcome Derek to the EHA Board! 🎉

Derek is a board member of the Huntington's Disease Association of Ireland and a gene-negative family member. With experience on the EFNA Community Advisory Board, he brings a deep commitment to making patient voices heard at the European level.

In his own words:
"I’m thrilled to join the board of the European Huntington’s Association (EHA), bringing my passion for advocacy to support people affected by Huntington’s disease across Europe.
I've seen firsthand the profound impact of HD on families, which drives my commitment to improving care, awareness, and community support. I look forward to fostering stronger connections between national groups like ours in Ireland and the wider HD and neurological communities."

We are glad to have you with us, Derek. Welcome aboard!

What a week in Iceland! 🇮🇸

EHA's team, represented by Filipa and Ruth, had the honour of attending the Icelandic HD Association conference in Reykjavik, connecting with the local HD community and sharing some of the work we do at EHA.

The Icelandic HD Association (https://www.huntington.is/) was founded just five years ago and already has around 30 members. A small but mighty community, and a wonderful example of what becomes possible when people affected by HD come together.

A warm thank you to Gunnhildur Sif Oddsdóttir, President of the Icelandic HD Association, for the invitation and for the incredible warmth shown to our team. It was a privilege to hear firsthand about the challenges of living with a rare disease in Iceland, and about how the Association has helped its members feel less alone.

Takk fyrir, Iceland. 🙏 We hope to see you again soon!

Today's the day! 🧬 Join our open webinar with Roche this evening for a deep dive into the Phase I POINT-HD Trial.

🕐 6:00 PM CET
📋 Register: https://us02web.zoom.us/meeting/register/3mWWkORVRti7iBS0F9WBzg

If you have any questions or topics you’d like to see addressed during the session, you can let us know in the registration form or send us a message.

See you there! 👋

🧬 Upcoming Webinar: Phase I POINT-HD Trial

Join us for an open webinar with Roche to dive deep into their latest ongoing research programme.

🗓️ Tuesday, May 26th
🕐 6:00 PM CET
🔗Register here: https://us02web.zoom.us/meeting/register/3mWWkORVRti7iBS0F9WBzg

We are pleased to have Patrik Brundin, MD PhD, Therapeutic Area Leader for Movement Disorders, and Peter McColgan, MD PhD, Global Development Leader at Roche, sharing this research update with the HD community.

Don't miss this opportunity to hear directly from the scientists shaping the future of HD research in Europe.

Nutrition in Huntington's Disease is about so much more than meal planning 🍽️

From early, unexplained weight loss to swallowing difficulties in later stages, nutritional challenges are central to HD, and so is the care behind addressing them.

Our latest article explores how nutritionists, caregivers and multidisciplinary teams can work together to support quality of life at every stage of the disease. Read the full article 👉 https://eurohuntington.org/2026/05/22/importance-of-nutrition-in-hd-care/

Want to learn more? The Nutrition and HD course on the Huntington Academy dives deeper into these topics 👉 https://huntington-academy.org/welcome-to-the-nutrition-and-hd-course

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.