We are an umbrella organization for Huntington’s Disease (HD) associations from 32 countries.
Different stories bring different perspectives and they all add up to what it can be like to cope with HD.
🤝 During the EHA Conference 2023 in Belgium, we had a dedicated session to present the many faces of HD. This was one of the highlights of the conference, as the attendees had the privilege to listen to the real-life experiences of brave HD advocates about being gene-positive, gene-negative, dealing with HD symptoms, caring for someone with HD, and being a person at risk.
💚 Thank you to Bruce, Javier, Rob, Saija and Tess for sharing their inspiring stories with us!
On December 20th, Uniqure released updates from their trial where the gene therapy AMT130 is being tested. Up to 30 months after the one-time dosing has been given, the trial participants who have received the lowest dosing show signs that they maintain functions compared to people in the same disease stage who haven’t received the treatment.
“This is great news to get towards the end of the year. I am hopeful that 2024 will bring more progress for this project as well for the other HD trials and that we will take important steps towards getting treatments to patients.” – says Astri Arnesen, president of EHA.
🌎 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.
We are truly grateful for your participation and attendance at the conference last weekend, it was filled with inspiration, learning, and connection.
We have tried to capture the best moments of each session, workshop and social activity so that you can always enjoy and remember them.
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.
An European platform where all Huntington’s disease trials are presented in plain language.
An online eHealth platform to improve the quality of life for those of us affected by rare diseases
We’re bringing together families, professionals, and supporters to strengthen the HD community 💙 You can also make a difference by joining our Teaming initiative, donating just €1 per month to support families affected by Huntington’s disease. Together, we get stronger!