Belonging, Connection, and Hope: Highlights from the EHA Conference 2025

– Written by the Moving Forward team on 30^th October 2025

The HD community recently gathered in Bucharest, Romania, for the European Huntington Association Conference 2025.

This was an inspiring and deeply emotional event that brought together families, professionals, and advocates from across Europe.

This article shares the feedback and reflections from the Moving Forward team, as well as heartfelt testimonials from family members and professionals who attended the conference. Together, their voices paint a vivid picture of belonging, connection and hope within the global community.

“This has been a special conference, not only because I have been involved in the front line of the organization, but also because of many other factors. My priority this year was to have a larger group of Spanish people attending an EHA event for the first time, and the result was deeply satisfying. But not because of the numbers, but because of the real impact these conferences have on the real lives of the people who are part of our community.

Hearing how a conference has changed their lives is something I will never get used to and that never ceases to move me deeply. Because for me, that is the real and authentic reason why these conferences make sense: to connect people and make them feel that they are not alone. To give them the strength to move forward, supported by the community and family that we are.

And it is truly moving to see how these meetings touch the hearts and the way of living and coping with HD of those who attend. Thank you for making it possible.”

— Ruth Blanco, Coordinator of Moving Forward (Spain)

“The conference was both inspiring and deeply meaningful. I truly enjoyed reconnecting with familiar faces and building new connections and friendships. Attending these conferences gives me a much broader perspective on the incredible amount of work being done globally for Huntington’s disease, and reminds me of how strong and united our international community is in working towards the same goal. The programme was very informative, offering a powerful balance between personal stories and professional expertise.

I am already looking forward to the next conference and would highly recommend it to anyone involved in the HD community.”

— Julie Skaberg, Coordinator of Moving Forward (Norway)

“The conference was really fun, I enjoyed going there with my friends and to be able to meet others in the same situation. It’s a special feeling to attend these kind of conferences, I don’t think it can be described in words to someone who hasn’t been at one. The feeling of belonging and the feeling of having a lot of “friends” that you have never even talked to or met, because you are all in the same boat and there is an understanding for each other that I don’t think you can find in any other place. Thank you EHA for making it possible for us to gather!”

— Elin Berg, Co-Coordinator of Moving Forward (Sweden)

“It was a true honour to be part of the EHA Conference in Romania. The entire event was an incredibly powerful experience – full of inspiration, new knowledge, and most importantly, a deep sense of belonging and family that connects us across the world through Huntington’s disease.

It was wonderful to meet people who are walking a similar path, to share our stories, fears, and hopes, and to connect with professionals whose empathy and expertise help us find light even in difficult moments. The whole conference created a safe and supportive space where we could speak openly and feel truly understood.

From the bottom of my heart, I want to thank EHA for this unique opportunity – for helping us realize that we are not alone, for bringing new insights that move care and awareness forward, and for the beautiful atmosphere of kindness and humanity that filled the entire event.”

— Nikola Krejčířová, Coordinator of Moving Forward (Czech Republic)

“The EHA conference took part in Bucharest some weeks ago. Every time I take part in events like this, I’m reminded of how much there is still to learn, to discover, and to share about Huntington’s disease and all the challenges it brings. Sharing my experience — as a caregiver, as someone at risk, and as an advocate — always feels powerful. Each time, I hope it inspires someone to open up, to connect, because that connection truly is a form of medicine.

Thank you to the European Huntington Association for trusting me as both a speaker and a peer-support group moderator. With every passing day, I realize how much I need this community, and how strongly I want to make sure other young people impacted by HD get the support they deserve.

A special thank you to HD-CAB — having the chance to speak directly with pharmaceutical companies and help them understand how to approach research in every dimension of this disease is something I’m deeply proud of. I carry the voice of my community with me, and I only hope I did you justice. To my beautiful HD family, thank you. Nikola, my blonde (blind) sister from another mister, you already know everything, no words needed. Juan Carlos, my latin heartbeat, you’re pure energy and the perreo with you is always the best therapy. Luis, your doubts are mine too, but next time the kebab is on me, promise! And to every single person I met, hugged, laughed, danced and cried with at this conference — you are the beating heart of this family.

Now my “HD battery” is fully charged, and I’ll try to go back to being a “normal” 27-year-old…but with a heart overflowing with love and gratitude. Thank you.”

— Claudia Villa, Coordinator of Moving Forward (Italy)

Transformative Encounters

“I had never been to a conference on HD before. (…) When I landed in Bucharest, on the way to the hotel, I felt dizzy, panicked, had stomach pains, felt lonely, and experienced my constant uneasiness. The conference started at 9:00 sharp, (…) the most interesting topics I had ever heard in my life, and for my life. I felt I was in the right place.

When the disease appears in your family, you are affected, whether you are a child, mother, partner, negative, positive, or at risk. (…) And it hurts. And who can you explain that pain to? Because it is a rare disease, but above all, it is confusing, incomprehensible, difficult to explain. And you feel alone. And your heart breaks, it breaks a lot, and it breaks so many times…

But these days I discovered that there are people willing to pick up those pieces of your heart. And you are no longer alone. Because here, this is no longer rare or incomprehensible.

Thank you. Thank you so much. For being here, for creating. For organizing these days that have allowed us all to see a different landscape. A much more connected, more understanding world, eager to go for it. Thank you for these transformative days.“

— Nerea, Family Member (Spain)

Professionals and Families United

“Participating in the European Huntington Conference (Bucharest, 25-28 September) this year was of great professional importance, as this network brought together leading experts and clinical researchers to promote the development of new treatment strategies, share groundbreaking research and strengthen collaboration between centres offering follow-up and clinical trials for Huntington’s disease. Participation ensured access to up-to-date knowledge that is crucial for improving the quality of life and care for patients and families affected by Huntington’s disease.”

— Amna Aslam, Medical Doctor (Norway)

Finding a Community, Finding Yourself

”How did I end up at the conference in Bucharest? Well, my parents, who don’t speak any English, decided they wanted to go and learn more about Huntington’s and spend more time with the people from the Association. I, who had no interest whatsoever, decided to go simply to translate and help them understand things better. At no point did I think of this conference as something that could be useful to me, but rather as something my parents wanted to do and that I was going along to provide moral support. (…)

In Bucharest, I not only met experts dedicated to understanding and supporting people with Huntington’s, but also other young people in the same situation as me. People with seemingly normal lives, who also had relatives with Huntington’s disease and who, like me, had also been diagnosed. Without thinking too much about it, I signed up for a talk aimed at people who had tested positive for the gene. (…) I didn’t know that this talk would awaken so much within me. I went without expectations, without knowing what I was looking for, and I found something I didn’t know I needed. A group of people from all over Europe who not only listened to me, but, for the first time in seven years, made me feel truly seen and understood. I heard stories that could have been my own. Fears, doubts, and insecurities that until then I thought only existed in my head. In that room, for the first time, I allowed myself to truly open up. To share not only the superficial, but also what I had never dared to say out loud. For the first time, I allowed myself to be vulnerable. And it was liberating. I cried, I laughed, I listened. I healed. I healed a part of myself that I didn’t even know was wounded. Seeing others get emotional about my story, as much as I did about theirs, made me realize that something essential was missing from my puzzle: a community.

And I found that community there.

Leaving Bucharest was like waking up from a dream you don’t want to leave. But I left with a fuller heart, with the certainty that I am not alone, and with a new perspective on my own story. For the first time in a long time, Huntington’s disease ceased to be just a silent shadow and became a bond, a reason to connect with others, a path I don’t have to walk alone.”

— Sara, Family Member (Spain)

The Bucharest conference was more than a meeting — it was an event that showed the power of unity, empathy, and shared purpose. Across languages, generations, and experiences, participants found not only knowledge but belonging; not only information but transformation.

Every story told, every hug shared, and every tear shed contributes to a collective movement and shows that we are stronger together.

The EHA will continue to work every single day to push boundaries, raise awareness, and build a future where no one faces Huntington’s disease alone.