We are an umbrella organization for Huntington’s Disease (HD) associations from 32 countries.
EHA Board elected October 2022
Last Monday, we had a webinar with Henk Schuring, Chief Regulatory and Commercialization Officer at Prilenia, and Anne Rosser, Professor at Cardiff University, where we had the opportunity to better understand what Prilenia’s request for EMA’s (European Medicines Agency) approval of Pridopidine means for the Huntington’s Disease community.
🙌 Can’t wait to learn more? Dive into our comprehensive article, covering the webinar’s key topics and the frequently asked questions, for an in-depth understanding of the implications for patients.
The Moving Forward project from the European Huntington Association is growing and working on several fronts, and is now collaborating with 🌎 9 HD Associations in Europe.
To make the Moving Forward work more visible to the national and international HD communities, we have created Facebook and Instagram accounts exclusively dedicated to this project.
☺️ We believe that having our own communication channels will make it easier for people to get the latest Moving Forward updates and take part in everything we have going on.
Follow us now and be the first one to check our new post with exercise tips for HD families and the most recent chapter written by Luis for the Chronicle of a Fortune Foretold!
A few weeks ago, the team behind the “Huntington Academy” project gathered in Brussels for a two-day meeting.
Astri Arnesen, Claudia Azañedo and Filipa Júlio from the European Huntington Association, Ruth Blanco from the Spanish Huntington Association (ACHE), Regina Gospodinova from the Bulgarian Huntington Association and Olivier Graf from the Ligue Huntington Francophone Belge have literally sat around a table to discuss the goals, action plans and next steps of the “Huntington Academy” project funded by the European initiative Erasmus+.
👩💻 These two days were full of productive discussions about what should be the main features and contents of this new e-learning platform that aims to educate and empower the caregivers of people impacted by HD.
It was great to get to know distinct and yet similar HD realities, share personal and professional experiences and learn from each other.
🙌 Everyone returned home stronger and more motivated than ever to make a positive contribution to the global HD community. Soon you will find out more about this project, so please stay tuned!
🌎 With nearly 300 participants from over 23 countries, the EHA Conference in Belgium marked a decisive opportunity for the HD global community and contributed to our main values for this event: 💡 Knowledge, 💙 empathy and 💪 empowerment.
🙌 A united community for a united action.
Together with physiotherapists, we have developed a resource to help you live an active life.
Do you have any questions about Huntington's disease? Ask our doctor!
Read our book on nutrition problems and solutions for to Huntington families, caregivers and medical staff.
This project wants to hear and engage those traditionally less involved in Huntington Disease research.
An European platform where all Huntington’s disease trials are presented in plain language.
A global initiative to represent the voice of the global HD community.
An online eHealth platform to improve the quality of life for those of us affected by rare diseases
To learn more about our projects, events and other activities related to huntington disease and our big community