European Huntington Association

?? Reminder: Join Our Webinar on Genetic Testing & Family Communication ?? November 27th, 6PM CET ?? Online This session features inspiring stories and expert advice on navigating genetic testing and sharing HD information within families. Speakers include HD family members, researchers and support specialists, with open discussions led by EHA President Astri Arnesen. ? Don’t miss this opportunity to learn, connect and share. Register now ?? https://bit.ly/3CzYW1F #HuntingtonsDisease #GeneticTesting #FamilySupport

?? Reminder: Join Our Webinar on Genetic Testing & Family Communication ?? November 27th, 6PM CET ?? Online This session features inspiring stories and expert advice on navigating genetic testing and sharing HD information within families. Speakers include HD family members, researchers and support specialists, with open discussions led by EHA President Astri Arnesen. ? Don’t miss this opportunity to learn, connect and share. Register now ?? https://bit.ly/3CzYW1F #HuntingtonsDisease #GeneticTesting #FamilySupport

?? Join Us in Our Upcoming Webinar! Deciding about genetic testing and sharing information within HD families can be incredibly challenging. This webinar brings together personal stories, expert insights and practical support to help navigate these decisions. ?? Date & Time: November 27th - 6pm CET ?? Where: Online Webinar (Open to all) ? Meet the speakers: ?? Anne Elizabeth S. Velez Magnusson, a young woman at risk of HD, will share her personal journey and the long process of deciding whether to undergo genetic testing. ?? álvaro Mendes, DECIDE Project Manager, will discusse how genetic counseling can influence family communication about HD. ?? Alison Metcalf, who provides online support to HD families, will share her expertise and present valuable support options available. ?? Astri Arnesen, EHA president and HD family member who tested negative 15 years ago, will moderate the session and lead an open discussion. Register now and be part of this important conversation! ? https://bit.ly/3CzYW1F ?? This webinar is for everyone - HD family members, healthcare professionals, friends, and supporters. Let’s learn together about the challenges and support available when dealing with HD. ?? Note: The session will be recorded. You can protect your privacy by turning off your camera and using an alternative name. #HDWebinar #HuntingtonsDisease #GeneticTesting #HDFamilySupport #GeneticCounselin

?? Community Reflections from the HD-CAB Round Table ?? At our latest round table, audience members shared powerful thoughts on the impact of collaborative efforts in Huntington's disease research and advocacy. These reflections underscore the value of bringing patient voices and professionals together to shape the future of HD care. Swipe through for inspiring quotes from our HD community! #HDCAB #PatientVoices #CollaborationInCare #HuntingtonsDisease

?? Uniting for Neurological Health in the EU ???? Yesterday, EHA and EFNA president Astri Arnesen attended the meeting "Invisible Issues: Bridging the Gap Between the Perception of Neurological Conditions and Their True Impact" at the European Parliament. ?? The meeting featured two insightful panel discussions highlighting the challenges faced by patients and caregivers dealing with neurological conditions throughout early and adult life. Topics included misdiagnosis, lack of access to basic resources, employment challenges, and the specific nuances of invisible and neglected conditions. ? ???? Through efforts like the MEP Interest Group on Brain Health and Neurological Conditions, we aim to raise awareness, reduce stigma, and increase resources for better care and quality of life. A big thank you to the seven MEPs who showed up. It was a privilege to stand alongside many other dedicated organizations, all united in advocating for improved understanding, support, and resources for neurological health. Together, we can make a meaningful difference for everyone affected by neurological conditions in the EU and beyond! ?? #BrainHealth #NeurologicalConditions #EU

???? Strengthening Brain Health Advocacy in Europe ?? ??At EFNA’s MEP Interest Group meeting on Brain Health and Neurological Conditions, hosted by MEP Romana Jerkovic, EHA President Astri Arnesen joined key discussions on policy and support for those impacted by neurological diseases. They highlighted the urgent need for patient-centered policies and increased awareness to drive change in the management and treatment of brain disorders across Europe. ?? Together, we’re working toward a future with stronger support and resources for brain health. #BrainInnovationDays #BrainHealth #Innovation #Policy #EU #BrainResearch

In September, we hosted a discussion with international HD advocates to share their thoughts and experiences to an audience of industry partners, associations and researchers. Topics included their day to day lives, educational barriers, meaningful outcomes and understanding about research. Three participants, Jessica K?hli, Rob Haselberg and Claudia, discuss their takeaways and impact of this discussion.

?? New Webinar Video Available! Our latest webinar, “Research Insights: Latest Updates on Ongoing Studies,” is now available on our website and YouTube channel! Professor ?sa Petersén and experts from Prilenia, uniQure, PTC Therapeutics, Inc. and Wave Life Sciences shared exciting updates on clinical trials for Huntington’s disease. ?Catch up on the latest research insights and Q&A session here ? https://bit.ly/4e8mA2H #HuntingtonsDisease #ClinicalTrials #EHAWebinar #ResearchUpdates

?? Join us in calling for more MEPs to join the MEP Interest Group on Brain Health & Neurological Conditions and to advocate for the 1 in 3 of us who will be affected by a neurological condition in our lifetime. ?? Globally, there has been a 40% increase in deaths from neurological conditions in the past 30 years, meaning these conditions are now the 2nd leading cause of death worldwide. Neurological conditions create the greatest economic burden of any non communicable diseases, costing the European economy over €300 billion annually! Collectively, they represent the most significant health challenges within the EU, impacting millions with their wide-ranging effects on individuals' lives and placing a substantial burden on our healthcare systems. Despite this, the attention and resources allocated to neurological health remain insufficient. ?? Our MEPs' support for initiatives such as the MEP Interest Group on Brain Health and Neurological Conditions will be instrumental in bringing about necessary change, offering hope and improved quality of life for the millions living with neurological conditions in the EU. ?? Call on your regional MEPs to pledge their support for the MEP Interest Group on Brain Health and Neurological Conditions by signing here ? https://bit.ly/3UmInML #EUhealth #BrainHealth #neurology

?? Join us for the upcoming webinar about the latest developments in ongoing clinical trials, moderated by professor Asa Petersen, HD clinician and researcher, who will start the session with an introduction. ?? There will be representatives from the companies that have ongoing or already finalized clincial trials in HD. Prilenia, uniQure, PTC Therapeutics, Inc. and Wave Life Sciences will be sharing key insights on research updates. Register here ?? https://bit.ly/3Y4Bwsv