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 […]
Prilenia Enters into a Collaboration and License Agreement with Ferrer for the Commercialization and Co-Development of Pridopidine in Europe and Other Select Markets
Prilenia and Ferrer Partner to Advance Pridopidine in Europe and Select Markets What do we know? Prilenia has entered into a significant collaboration with Ferrer to commercialize and further develop pridopidine in Europe and select markets. Pridopidine is a potent and highly selective  orally administered sigma-1 receptor (S1R) agonist designed to regulate key neuroprotective mechanisms […]
Why should the HD community be involved in Health Technology Assessments?
Why should the HD community be involved in Health Technology Assessments? Â In our previous article about Health Technology Assessments (HTAs), we explained what HTAs are and why they matter. If you haven’t had the chance to read it, we suggest you take a look and then come back here, since there is valuable information there […]
uniQure’s Gene Therapy for Huntington’s Disease Receives Special FDA Designation
uniQure’s Gene Therapy for Huntington’s Disease Receives Special FDA Designation What do we know? uniQure has announced that their experimental gene therapy, AMT-130, has received Regenerative Medicine Advanced Therapy (RMAT) designation from the U.S. Food and Drug Administration (FDA). AMT-130 is a gene therapy that aims to slow the progression of HD by targeting and […]
update on the Phase II GENERATION HD2 study Roche announces study continuation and adjusts dosing strategy for tominersen in early-stage HD patients What do we know? Roche has announced the continuation of the GENERATION HD2 Phase II clinical trial evaluating tominersen in individuals with early signs of Huntington’s disease. Following an interim analysis by an […]
Registration is now open for the 2025 EHA Conference
Registration is now open for the 2025 EHA Conference The European Huntington Association (EHA) is pleased to announce that registration is now open for its 5th Biennial Conference, which will take place in Bucharest (Romania) from 25 to 28 September 2025. Under the slogan ‘Let’s shape our future together, we are the change!’, the conference […]
Growing Up with Hd – Insights & Support Strategies with Siri Hagen Kjølaas
Growing Up with Hd: Insights & Support Strategies with Siri Hagen Kjølaas At last year’s EHDN & Enroll-HD Conference in Strasbourg, we had the privilege of interviewing Siri Hagen Kjølaas, Ph.D., to discuss her groundbreaking research on the psychosocial challenges faced by families living with Huntington’s Disease (HD). Siri, who earned her Ph.D. from the […]
