MEP Interest Group Meeting Focuses on Rare Neurological Conditions and Mental Health

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On Wednesday, 25 February 2026, the MEP Interest Group on Brain Health and Neurological Conditions held a dedicated meeting at the European Parliament in Brussels, exploring the theme “Living With Rare Neurological Conditions and the Impact on Mental Health and Wellbeing.” The event was co‑organised by MEP Ondřej Dostál (Czechia, Non‑attached Member of the European Parliament).

The meeting brought together people living with rare neurological conditions, caregivers, patient organisations, clinicians from neurology and mental health, researchers, and policymakers. In-person interventions were shared by six MEPs: Ms Cynthia Ní Mhurchú (Ireland, Renew Europe Group), Ms Nina Carberry (Ireland, Group of the European People’s Party), Mr Tomislav Sokol (Croatia, Group of the European People’s Party), Mr Jan-Peter Warnke (Germany, Non‑attached Member of the European Parliament), as well of course by our host, MEP Dostál. MEP Billy Kelleher shared a strong message via video (Ireland, Renew Europe Group).

Executive Director of the European Federation of Neurological Associations (EFNA), Dr Orla Galvin, presented results of EFNA’s recent survey on the invisible issues of neurological conditions. The sub-set of data relating to rare neurology is now available (n=560). The disease areas with the largest cohort of responses were Myasthenia Gravis (MG), Dystonia and Charcot-Marie Tooth Disease. Respondents reported a high burden of frequent multi-system symptoms and the findings highlight the pervasive and ongoing nature of symptoms affecting daily functioning and quality of life.
The full report is available to read here.

For our ‘Lived Experience Insights’ panel, Chair Astri Arnesen (EFNA President) was joined by Cătălina Crainic (Board Member, Dystonia Europe), Lutgarde Allard (President, European Myasthenia Gravis Association), Derek Readman (Board Member, Huntington’s Disease Association of Ireland) and Tonje Elgsaas (Psychologist, specialised in habilitation, Norwegian Centre for Rare Diseases, unit Frambu).

Discussions highlighted the profound mental health and well-being challenges experienced by those affected, the lack of timely diagnosis, fragmented care pathways, and the persistent stigma and isolation often associated with rare neurological diseases.

Participants emphasised the urgent need for stronger EU‑level action, increased awareness among policymakers, and more coordinated, cross‑sector approaches to ensure that mental health is fully integrated into care and support for people with rare neurological conditions. With 30 million Europeans affected by rare diseases, many of which have neurological symptoms, the meeting underscored the critical importance of improving recognition, policy attention, and access to appropriate care.

MEPs noted that individuals living with rare neurological conditions across Europe can face significant challenges in obtaining timely recognition, diagnosis, and appropriate care, partly due to limited familiarity with many rare conditions among healthcare professionals. MEPs emphasised the importance of strengthening professional understanding and improving the consistent recognition of rare neurological conditions across European healthcare systems. They also expressed support for ensuring that health — and in particular brain and neurological health — is appropriately reflected in future European funding frameworks, indicating their willingness to raise this priority within discussions of a revised European budget, including with the Parliament’s Budget Committee. It was further acknowledged that while individual rare neurological conditions affect relatively small patient populations, their cumulative impact is substantial, with many overlapping symptom profiles and socio-economic implications that require coordinated European action. In this context, MEPs highlighted the continued importance of strengthening and expanding the implementation of the European Reference Networks (ERNs) across Member States.
Derek Readman highlighted the significant lack of services and support structures equipped to address the needs of people living with rare neurological conditions, noting that this gap exists across many European countries. He emphasised that the establishment of more appropriate services and supports would significantly improve the mental health and overall well-being of affected individuals and their families. The challenges of the diagnostic odyssey were further illustrated by Catalina Crainic, who shared that she consulted twelve healthcare professionals before receiving a diagnosis of dystonia. Lut Allard also stressed the importance of enabling people with rare neurological conditions, including myasthenia gravis, to remain in employment, noting that many individuals could continue working if workplaces were more flexible and adaptable to their needs. She further observed that people living with rare neurological conditions often feel compelled to demonstrate their capability by working significantly harder than colleagues without a recognised health condition. Tonje Elgsaas also noted that adopting a more holistic approach to rare neurological conditions could deliver long-term societal and economic benefits, improving outcomes for individuals and families while reducing pressures on national public systems of care and support.

A recording of the meeting is available on EFNA’s Youtube channel.

The MEP Interest Group on Brain Health and Neurological Conditions is an initiative of the European Federation of Neurological Associations (EFNA), who provide secretariat to the Group.The MEP Interest Group aims to raise political awareness of the impact of neurological conditions in Europe. It encourages patient-centric policy solutions aiming to prioritise these disorders, decrease stigma, increase access to treatment, encourage research, promote patient empowerment, and improve quality of life overall. As an initiative led by a patient organisation, the Interest Group’s work and recommendations aim to ensure that its policy solutions align with patients’ preferences and that their meaningful involvement is enshrined and supported in all arising policy actions.

You can learn more about the Group here.

The MEP Interest Group on Brain Health and Neurological Conditions is supported in 2026 by: