Neurological Health Gains a Voice in Europe: Patients, Part of the Solution at EFNA #StrongerConnected
Brussels, April 8-9, 2025 — In a crucial time for the European community of patients with neurological diseases, Dystonia Europe had an active and visible presence at the #StrongerConnected workshop organized by the European Federation of Neurological Associations (EFNA) in Brussels. The event brought together representatives of patient organizations, caregivers, and industry partners. One of the central themes was health literacy.
For patients with Dystonia, health literacy is particularly important. The lack of clear and accessible information about the disease, both among the general public and healthcare professionals, continues to be a barrier to early diagnosis and access to proper treatments. In addition to current resources, EFNA emphasized the need for educational campaigns and dedicated digital tools to better aid patients in understanding and managing their condition.
Official Representation in EFNA Leadership
A significant moment for the Dystonia community was the strengthening of Dystonia Europe’s role in EFNA’s decision-making structures, with the appointment of Cătălina Crainic as a member of the board. From this position, Dystonia Europe could directly influence the strategic directions of the federation, ensuring that the interests of those affected by Dystonia are well-represented in the European dialogue on neurological health.
This presence on EFNA’s board underscores Dystonia Europe’s firm commitment to function as an active voice in European neurological advocacy, contributing to the development of policies and initiatives that directly address the needs of Dystonia patients — from access to treatments to reducing stigma and increasing health literacy. Furthermore, Dystonia Europe reaffirms its solidarity with EFNA’s efforts and strongly supports its initiatives to improve the lives of patients with neurological conditions.
A Stronger, More Connected Community
Participation in the #StrongerConnected workshop offered an opportunity to strengthen relationships with other European organizations and exchange ideas about best practices in supporting patients. The event offered a framework for open and collaborative dialogue. The photographs taken during the workshop reflect the positive energy and cooperation between participants, highlighting EFNA’s commitment to promoting a united, informed neurological community actively engaged in improving the quality of life for those affected by neurological disorders.
Future Plans
EFNA is also planning a meeting of the European Parliament Interest Group on Brain Health and Neurological Disorders, which will focus on health literacy and improving access to treatments for patients with neurological diseases.
EFNA is an umbrella organization that brings together twenty pan-European patient groups in neurology, as well as national neurological alliances. The group holds non-state actor status with WHO Europe and coordinates the Interest Group on Brain Health and Neurological Disorders. EFNA uses these platforms and other initiatives to ensure consideration of patients’ perspectives at the highest level.
Dystonia Europe reaffirms its commitment to advocating for recognition, access to treatment, and support for all Dystonia patients. Through its voice in EFNA, Dystonia is becoming an increasingly prominent priority on the European health agenda.
Catalina Crainic, Board Member Dystonia Europe and Board Member EFNA
