We are an umbrella organization for Huntington’s Disease (HD) associations from 32 countries.
EHA Board elected October 2022
🗓️ On October 23rd, the European Huntington Association held an engaging and informative webinar titled “Research Insights: Latest Updates on Ongoing Studies.”
The webinar provided a comprehensive overview of the latest developments in clinical trials, with each company sharing updates and preliminary insights from their ongoing or completed studies in HD treatment.
These presentations underscored the diversity of approaches and the progress being made across therapeutic areas.
🧠 While the scientific community keeps working to develop pharmacological treatments, it is important that we focus on improving quality of life and adopting habits that are beneficial for our health.
💪 Physical activity is an important component of a healthy lifestyle. There are good reasons to believe exercise might be helpful in HD.
➡️ Read the complete article to find out the the benefits of physical activity and available resources to get started!
🙌Uniqure’s gene therapy for Huntington’s Disease, named AMT-130 has passed a significant next step.
The company announced that the US regulators, FDA, has granted them a Regenerative Medicine Advanced Therapy (RMAT) designation.
Read the complete article to learn more.
The 705 Members of the European Parliament (MEPs) that are elected, shape the future of 450 million European citizens – including ours.
🗓️ The European Elections Will Be Held From The 6th To The 9th Of June Across The EU. The 705 Members of the European Parliament, who will be in charge of decision and policymaking for the next five years, will be elected by the citizens who show up to vote.
We encourage you to find the candidates in your country who have shown they understand the importance of the future of our healthcare and show up to vote.
➡️ Read the complete article to find out the European initiatives that influence the life of HD families
The 705 Members of the European Parliament (MEPs) that are elected, shape the future of 450 million European citizens – including ours.
Last week, we attended the European Conference on Rare Diseases and Orphan Products organized by EURORDIS in Brussels. This is the biggest conference focusing on rare diseases.
These were two intense days of learning and sharing, where more than 700 participants gathered to strengthen the voices of people impacted by rare diseases and discuss concrete measures to provide a better quality of life to all those living with a rare condition.
The Rare Disease Community is Better Together! #ECRD2024
🕺 As we move through #MayAwarenessMonth, we bring you a closer look throughout the history of Huntington’s Disease.
💃 Learn all about our #HuntingtonDance initiative and help us make history around the world!
Here is the choreography created by Coco Style Spain to raise awareness for Huntington’s Disease worldwide by dancing to Katy Perry’s song Fireworks.
You can now start rehearsing the steps to publish your video during #MayAwarenessMonth as part of the Huntington Dance initiative and remember to tag us on Facebook and Instagram and use the hashtag #HuntingtonDance
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
