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 Huntington Association attended the EURORDIS Membership Meeting 2025 in Riga.
The core theme, “Maximising Our Impact: Strengthening the Voice of the Rare Disease Community in Decision-Making,” focused on the “3 T’s”: Timed, Tailored, and Trouble-free Care, Support, and Information to everyone impacted by rare diseases in Europe.
These were days of fruitful dialogue, collaboration, and empowerment, through three interactive workshops, participants gained practical tools to:
Additionally, a dedicated Mental Health workshop equipped patient group leaders with strategies and resources to address the emotional challenges faced by those living with rare diseases.
As Avril Daly, President of EURORDIS, has nicely put it, “when we come together, we can lift each other up”.
The European Huntington Association is proud to be part of the EURORDIS family and truly values this connection.
Following several months of intensive online training, we had the opportunity to participate in the in-person sessions of the EURORDIS Open School 2025 in Barcelona during the first week of June. Dozens of participants from around the globe, representing various rare diseases, gathered with a clear objective: to enhance their training and capacity in patient advocacy.
This year, the Open School offered two specialized training programs: one on Scientific Innovation and Translational Research, and another on Medicines and Research Development, in which EHA participated.
The participants visited two leading institutions: the Hospital Sant Joan de Déu (SJD) and the Centre Nacional d’Anàlisi Genòmica (CNAG).
It was a unique opportunity to expand her knowledge, share inspiring experiences, and connect with other members of the global rare disease community.
EHA’s participation in both the EURORDIS Membership Meeting and the EURORDIS Open School underscores our ongoing commitment to advocating for the Huntington’s disease community and contributing to the broader rare disease landscape. We believe that by uniting our voices and continuously enhancing our skills, we can drive meaningful change for all patients.
– Article written by Filipa Júlio
