Topic: Living With Rare Neurological Conditions and the Impact on Mental Health and Wellbeing
Date & time: February 25, 2026 – 14.00 – 16.00 hrs CET
Location: EU Parliament, Brussels (Room SPINELLI 6G306)

 

EU brain health policy must reflect the mental health and wellbeing impact of rare neurological conditions on individuals and families.

This meeting will bring together people living with rare neurological conditions and their caregivers, representatives of patient organisations, healthcare professionals from neurology and mental health disciplines, researchers, and policymakers at European and national level and for the discussion to provide a collaborative space for sharing perspectives, raising awareness on rare neurological conditions and related challenges and strengthening recognition of mental health as a core component of care for people affected by rare neurological conditions. The meeting is kindly organised by MEP Ondřej Dostál, Czechia, Non-attached Member of the European Parliament and co-organised by MEP Interest Group on Brain Health and Neurological Conditions.

In Europe, 30 million people are directly affected by rare diseases. 75% of these diseases have neurological symptoms, seriously compromising the well-being and quality of life of those affected. The number of known rare neurological conditions is ever-increasing, and according to the European Reference Network for Rare Neurological Diseases (ERN-RND), 60% of those affected are still undiagnosed.

Despite the societal impact, rare neurological diseases rarely receive the attention they deserve from health systems and the policy and decision-makers who shape them. The individual impact is exacerbated by the stereotyping, stigma, discrimination, and isolation that face those living with rare neurological disorders owing to their symptomatic profile; and the failure to deliver policy to support rare neurological disorders. This means people with rare neurological disorders are often left without the care and treatment that they so urgently need.

From a lack of available specialists to be able to give a timely and accurate diagnosis, to fragmented care pathways, there are too many gaps in healthcare systems for people living with a rare neurological disease to fall through. There is no holistic approach to modelling and mapping all individual presentations of rare neurological disorders with the varying pathogenesis.

Objectives

• Raise awareness among policymakers about rare neurological conditions and their impact on mental health and wellbeing
• Foster cross-sector collaboration to develop scalable, inclusive solutions.

Expected Participants

• Representatives from patient organisations and advocacy groups
• Neurologists, healthcare professionals, and public health experts
• MEPs from the MEP Interest Group on Brain Health and Neurological Conditions, as well as relevant committees
• EU health policy advisors and stakeholders

Agenda

Kindly find the agenda here.

Please note that registration is mandatory:

For in-person attendance kindly register via this link.

To attend online, please register here.