European Huntington Association

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.

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!