The power of associationism present for the first time at the ENROLL-HD LANCOS meeting
– Written by Ruth Blanco, 15 February 2025
This February, we experienced a historic moment for the HD patient community!
Ruth Blanco, our MF project coordinator in Spain, was invited to participate as a representative of FEPAEH, in the annual meeting of researchers linked to ENROLL-HD, the LANCOS (Language Area Coordinators), which took place on 5 and 6 February in Madrid (Spain).
This has been a particularly significant experience for the entire HD association movement. For the first time in the history of this ENROLL-HD event, organised in close collaboration with the EHDN and the CHDI Foundation, the programme included a 40-minute presentation by a representative of a patient association, a very important step towards improving the relationship between this important observational study project and the reality of Huntington’s patients and families through the collective that represents them.
The power of associations in Huntington's disease
During the presentation, which took place in a room with more than 50 people from around the world, and was attended by the President of the CHDI Foundation and Jamie Levey, Co-Director, Clinical Research Platform, Ruth Blanco had the opportunity to highlight how associations have become an essential driving force for advancing information, support, awareness and research. Associations not only provide sustained support to families, even in the stages prior to their entry into the clinical circuit, but also actively contribute to creating community, generating practical knowledge and communicating the real needs of those affected to researchers, clinicians and other social and political actors.
The work of FEPAEH and European collaboration
We were able to present the work of FEPAEH as a success story in collaboration, coordination and networking, highlighting its role within the association movement in Spain and its constant commitment to patients and families. We highlighted the initiatives developed in close collaboration with the European Huntington Association, which amplify the impact of local work through international projects.
We were able to present:
- Huntington Academy, our free, multilingual online training platform for formal and informal carers,
- Moving Forward Project, especially its psychological support line, which seeks to address emotional needs that are often invisible in families. And in the context of this project, the book https://ehamovingforward.org/luis-book/ (Chronicle of a Fortune Foretold), an awareness-raising project that brings the reality of the disease closer through the human experience and narrative of Luis Aguilar, a young man at risk of carrying the mutation.
- Our participation in the ERN-RND with tools such as the Patient Journey for HD.
A necessary presence
The invitation of a patient association to a forum of this nature was a milestone and reflects an irrefutable fact: research advances more when the voices of those who live directly with the disease are incorporated.
This meeting has reinforced the idea that collaboration between science, associations and the community is key to continuing to move forward together in coordination and cooperation, as members of the same team, towards better treatments, greater understanding and a better quality of life for people affected by Huntington’s disease.
We hope that we can continue to build on this and that, with gestures such as these, our presence will go from being a historic event to being integrated as a natural process of working together for the benefit of patients and all members of the HD community.
