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Linking EU & National Advocacy & Policy for Neurology Patients in Europe

Join the World Brain Day event in Brussels on July 22nd, 2019 to discuss the importance of national brain plans and the collaboration between EU and national advocacy organizations. Explore the role of National Brain Councils and strategies for promoting brain research and health.

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Linking EU & National Advocacy & Policy for Neurology Patients in Europe

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  1. Linking EU & National Advocacy & Policy for Neurology Patients in Europe World Brain Day Brussels, 22nd July 2019

  2. 1. EBC – whowe are2. Working at national level: why?3. The genesis of National Brain Plans4. Supporting the operation of National Brain Councils: how?

  3. We stand together for the Brain • National Brain Councils • Industrypartners

  4. Europe needs to “expand brain research”

  5. The EU decision making process

  6. EU Presidencies

  7. Multidisciplinary councils uniting scientific organizations of neuroscientists, psychiatrists, neurologists, neurosurgeons, patients’ associations and industries • Aligned with the mission and vision of EBC • NBCs operate at national level and independently from EBC • ‘Observer’ status within the EBC constituency National Brain Councils

  8. Expertise regarding policy developments at national level relevant to brain research • Horizon Europe, animal research, HTA, etc. • Support brain advocacy beyond Brussels at member-state level • EU presidencies • Promote the adoption of National Brain Plans • Robust national strategies for supporting brain research and promoting brain health • Launch Norwegian National Brain Health Strategy, December 2017 Value of working with NBCs

  9. 9th-10th May - Dubrovnik, Croatia • Delegates representing 15 European countries • Strategic priorities: • Horizon Europe • National Brain Plans • Croatian Presidency of the EU • EBC EU-funded projects 5th NBC Academy Meeting

  10. Reaching out nationally… Holistic – Integrated – Collaborative Healthy vs. Diseased Treatment – Prevention – Promotion Optimised model of care Research Successful examples of Cancer & Diabetes

  11. Key recommendation • “There is a need for countries to develop, or refine, national strategies on brain research and healthcare within an overarching European context. Successful examples of national strategies in other research areas, such as cancer, already exist in Europe.” • DG Research and Innovation • (European Commission) European Month of the Brain – May 2013

  12. Reaching out nationally…

  13. Robust national strategies for supporting brain research and promoting brain health • Holistic approach that aims to accelerate science and reduce the impact of brain disorders • Launch Norwegian National Brain Health Strategy, December 2017 • Proposed Polish Brain Plan - World Brain Day, 22nd July 2019 National Brain Plans

  14. Strengthening synergies between EBC and the NBCs • Bottom-up vs Top down • Creating impact at national level • Adopting &Implementing National Brain Plans • Limited organizational capabilities • and/or resources (human &financial) • Need for support to advocacy Benefits &Challenges

  15. “EU Member States should work closely with patient representatives, scientific societies and clinicians within National Brain Councils towards designing and establishing National Brain Plans.” EBC Election Manifesto

  16. Proposals for 10 policy priorities to feed into National Brain Plans • First version launched during April 2019 (Croatian Medical Journal) • Developed on the basis of input received from NBCs • Consultation document: further feedback & validation by the Board of EBC 10 Priorities for National Brain Plans

  17. Still no cure for most brain disorders, hence necessary to focus on: • Risk reduction • Address Stigma • Prevention • Early detection • More research Value of Treatment: Timely intervention is key! Brain: Time matters!

  18. Finalisetheharmonised “backbone” for National Brain Plansacrosscountries • Developfurthernationalstrategies (chapters) on the basis of EBC’songoingwork • Foster engagement with National Brain Councils, Societies or Organisations Next steps

  19. Frédéric Destrebecq ExecutiveDirector fred@braincouncil.eu

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