The MEP Interest Group on Brain Health and Neurological Conditions is unique in representing the voice and interests of people affected by neurological conditions and their carers in the European Parliament. It provides a platform through which our members can engage directly with policy makers at the highest level.

In order to improve awareness of the MEP Interest Group and encourage engagement from across our membership and beyond, EFNA held a virtual workshop entitled “Engaging in advocacy at EU level and the benefits that can bring nationally” on Tuesday, February 4^th, 2025. The workshop was attended by 73 patient advocates and patient organisation representatives from across Europe.

The workshop was opened by EFNA Executive Director, Dr Orla Galvin, who began with a short poll of the audience. From this we learned that 75% of attendees have previously contact a local or regional policymaker, while 50% have contacted an MEP. 44% felt that they don’t understand the role of MEPs and workings of the European Parliament, while 56% said they understand these things well. 35% of attendees were not familiar with the EFNA-coordinated MEP Interest Group on Brain Health and Neurological Conditions.

Orla then gave an overview of the main role of an MEP in the European Parliament- voting on legislation to create laws that are binding across Europe. She explained that MEPs work to protect our interests, improving and passing the laws that affect our daily lives. Parliament defends freedom, equality, and the rule of law across the EU and promotes democracy and human rights around the world. It elects the President of the European Commission and makes sure EU institutions are doing their job properly. MEPs decide how the EU’s money is spent, and sign off on the EU budget. The European Parliament is our link to the decisions that matter.
Orla explained that the 700+ MEPs participate in 22 sub-committees. One of these is the SANT (public health) committee, which is of particular relevance to our advocacy work.
She then discussed MEP Interest Groups. An MEP Interest Group is an informal group of members of the European Parliament who come together around a specific policy or cause. These groups are not official parliamentary bodies, but serve as platforms to discuss and advocate for certain topics, often in collaboration with stakeholders, such as NGOs, patient organisations, industry and other representatives.
The MEP Interest Group on Brain Health and Neurological Conditions addresses 3 thematic areas within brain health and neurological conditions: (i) to eradicate stigma, isolation and discrimination, (ii) to ensure equitable access to treatments, services and support, and (iii) to promote patient empowerment for increased engagement.

EFNA’s Senior Communications Manager, Elizabeth Cunningham, then took the audience through the ‘MEP Advocacy Toolkit’, available from the EFNA website. The toolkit contains various resources that can help advocates to communicate with MEPs and to encourage them to join the MEP Interest Group. A downloadable spreadsheet is available that contains the names, countries and contact details of all members of the SANT committee. There is also the option to click on any country name on the webpage and the contact details for SANT committee members from that country will appear.
Various templates are available, including letters from both individual advocates or organisations, social media messages, key messages relating to neurology and infographics, all of which the audience were encouraged to make use of and modify where necessary.

Two members of EFNA’s Community Advisory Board, Andra Bria (Romania) and Saija Ristolainen-Kotimäki (Finland) shared their experiences of engaging with MEPs in their countries. The benefits of building good relationships with MEPs were also discussed by Gracemarie Bricalli, representing the European ME Alliance, Kanika Kohli, representing the European MS Platform and Lucía Montón, representing the European Migraine and Headache Alliance.

Finally, Orla announced an upcoming meeting of the MEP Interest Group on Brain Health and Neurological Conditions, which will take place a few days before Rare Disease Day 2025. To mark this important occasion, the event is entitled ‘Shaping the Future: Policy Responses to Rare Neurological Challenges.’ Registration for the in-person event has now closed but it is still possible to register to view the event online. You can register here.

Elizabeth closed the meeting by encouraging the audience to engage with EFNA through our social media channels: LinkedIn, Facebook, Instagram and Bluesky.

Slides from the workshop can be viewed here.