Bucharest 2025
EHA CONFERENCE IN BUCHAREST 2025 The 2025 EHA Conference, held in Bucharest, Romania, from September 25th to 28th, brought together the HD community under the inspiring theme “Shaping our future together – we are the change!”. Participants from across Europe and all over the world gathered to share experiences, exchange knowledge, and discuss new developments […]
Recent results for AMT-130: a step towards treatments that could slow Huntington’s disease
Recent results for AMT-130 A step towards treatments that could slow Huntington’s disease In September 24th, the company UniQure announced the results of its clinical trial after 36 months with AMT-130, a gene therapy for Huntington’s disease (HD). For the first time in a study of this kind, the published results suggest that in a […]
Encouraging Phase 1 Results for Skyhawk’s Huntington’s Disease Investigational Treatment
Encouraging Phase 1 Results for Skyhawk’s Huntington’s Disease Investigational Treatment Skyhawk Therapeutics has shared a press release with positive news about SKY-0515, the experimental drug they developed and are studying for Huntington’s disease (HD). This first study was a Phase 1 trial, which mainly checks whether a drug is safe and how it works in […]
The EHA Team Visits Lund
The EHA Team Visits Lund: Learning from Sweden’s Multidisciplinary HD Care During our visit to Sweden for our annual meeting, the EHA Team had the opportunity to go to Lund to meet with Professor Åsa Petersén, a psychiatrist, researcher, head of the HD Center, and Deputy Chief of the EHDN, as well as Camilla Svensson, […]
SIMPLIFYING SCIENCE: WHAT CAUSES HUNTINGTON’S DISEASE?
SIMPLIFYING SCIENCE: WHAT CAUSES HUNTINGTON’S DISEASE? In this new series, we want to take a deep dive into scientific concepts in a simple way, with the goal of eventually bringing research concepts closer to all of you. This first article will be dedicated to understanding the hereditary nature of HD. It is common to have […]
Community Update: Novartis is planning a Phase 3 trial based on Phase 2 results
Community Update: Novartis is planning a Phase 3 trial based on Phase 2 results Novartis recently issued a community letter announcing their plans for a Phase 3 clinical trial for votoplam, a potential new treatment for HD. This next step means they will test how well it works and how safe it is in a […]
I DIDN’T THINK THIS WOULD HAPPEN TO ME
I DIDN’T THINK THIS WOULD HAPPEN TO ME Encouraged by Ruth Blanco (president of the Spanish Association ACHE), I attended for the first time an HD Congress, the EHA Congress in Blankemberge (Belgium) in 2023. Accompanying a great group of people (Bruce, Rob, Saija and Tess), we recounted our situations, talked about the different faces […]
Raising Our Voices: EHA’s Ongoing Commitment to Patient Advocacy with EURORDIS
Raising Our Voices: EHA’s Ongoing Commitment to Patient Advocacy with EURORDIS The European Huntington Association (EHA) recently reinforced its dedication to patient advocacy through active participation in two key EURORDIS events: the EURORDIS Membership Meeting 2025 in Riga, Latvia, and the EURORDIS Open School 2025 in Barcelona, Spain. At the end of May, the European […]
PTC Press Release Explained: What It Means for Our Community
PTC Press Release Explained: What It Means for Our Community Astri Arnesen and Dina de Sousa take a closer look at PTC Therapeutics’ press release, highlighting what the latest updates mean for people affected by Huntington’s disease. In this video, they explain the main findings in a way that’s easy to follow and emphasize why […]
May Awareness Month: Shining a light on HD – One Action a Day
May Awareness Month Shining a light on HD – One Action a Day Every May, communities around the world come together to shine a light on Huntington’s Disease (HD). From families and caregivers to clinicians, researchers, and advocates, we are united by one goal: raising awareness and celebrating the strength, resilience, and humanity of the […]