On Wednesday, 25 February 2026, the Members of the European Parliament (MEP) Interest Group on Brain Health and Neurological Conditions convened at the European Parliament in Brussels to discuss “Living With Rare Neurological Conditions and the Impact on Mental Health and Wellbeing.” The event, co-organised by MEP Ondřej Dostál (Czechia, Non-attached Member of the European Parliament) and hosted by the European Federation of Neurological Associations (EFNA), brought together patients, caregivers, clinicians, researchers, and policymakers.
Discussions highlighted the challenges faced by people living with rare neurological conditions, including delayed diagnosis, fragmented care pathways, persistent symptoms, stigma, and social isolation. With 30 million Europeans affected by rare diseases, many with neurological symptoms, participants stressed the urgent need for EU-level action, greater awareness among policymakers, and coordinated approaches to integrate mental health fully into care.
EFNA Executive Director Dr. Orla Galvin shared results from a recent survey of 560 patients with rare neurological conditions, highlighting Dystonia, Myasthenia Gravis, and Charcot-Marie-Tooth Disease as the most common. Respondents reported significant symptom burdens that impact daily life and overall well-being.
As a Board Member of EFNA, representing Dystonia Europe, Cătălina Crainic underscored that patients with dystonia, particularly rare forms, often face blocked care pathways when access to diagnosis and treatment is limited. She explained that patients typically go through three stages in their care journey: in the first stage, the patient is actively searching for answers; in the second stage, progress can be blocked due to delayed diagnosis or restricted access to treatment. During this stage, patients may experience isolation, stigma, and discrimination, which can significantly impact their quality of life. The third stage, which would be ideal, can be intervention, access to treatment and care in a specialised centre, this can avoid that blockage and change the patient’s journey. She also highlighted the essential role of national patient organisations and umbrella networks in ensuring that patient voices are heard at the European level.
MEPs noted that while individual rare neurological conditions affect small populations, their combined impact is substantial, requiring coordinated European action. Strengthening European Reference Networks (ERNs), improving professional understanding of rare neurological conditions, and prioritizing brain and neurological health in future EU funding were highlighted as key measures.
The event provided a valuable platform for exchanging perspectives, raising awareness, and reinforcing the critical importance of mental health as an integral part of care for those living with rare neurological conditions.
Catalina Crainic
Board Member Dystonia Europe and EFNA and President Asociatia Childrens Joy
