EBC MEMBER ACTIVITIES

The membership of the EBC consists of patient groups, scientific and professional organisations as well as industrial partners. As per its statutes, the EBC accepts as Full Members pan-European umbrella organisations with an interest in the brain. Any organisation that supports the aims of the EBC can apply to become an observer in order to contribute in an advisory capacity. Organisations or individuals that have contributed in an outstanding fashion to the aims of the EBC can also become honorary members.

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Elizabeth Cunningham
communications@efna.net

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NEWS & ACTIVITIES

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NEWS, ACTIVITIES & ACHIEVEMENTS

November & December 2020

Virtual Conference for our MEP Interest Group on Brain, Mind and Pain with key stakeholders and high-level policy makers (from WHO, EP and EC). This event – The future of Brain, Mind and Pain Advocacy – led to the development of our Roadmap to Change, which maps out activities for 2021 and 2022. See: www.brainmindpain.eu

Working Conference on Making Neurology a Global Public Health Priority with the World Health Organisation and other leading international and European stakeholders – leading to the developmentof our Roadmap to Action, which maps our activities for 2021 and 2022. This was preceded by the development of an advocacy and communications strategy to support the roll out of the work.

Launch of e-learning platform with modules on ‘Effective Advocacy in a Virtual World’ – replacing our face to face Training Initiatives for Neurology Advocates [TINA]. See: www.efna.net/elearning

Collaboration with WHO NeuroCovid Global Forum to create and disseminate an international survey on the continuation of essential neurology services during the pandemic.

Advocacy with national health ministries and permanent representations in Geneva for the adoption of a new resolution on Global Action in Epilepsy and other Neurological Disorders. This was approved at WHA73 in November and will lead to the development of a 10-year intersectoral global action plan for neurology.

Roundtable in partnership with the European Huntington Association to focus on rare neurological disorders .

Launch of EFNA Advocacy Awards and Art Competition – winners of each will be announced in Q1 2021.

Involvement in various external events and activities.

Plans for 2021

Implement our strategy on Making Neurology a Global Public Health Priority – this will include the development of an alliance/platform of key stakeholders in the neurology field internationally, a capacity building event for national champions, an event at EU level for policy makers and the creation of an awareness/advocacy toolbox. The focus in 2021 will be in ensuring a coordinated response to the consultation re. the Global Action Plan.

Three roundtables related to the MEP Interest Group on Brain, Mind and Pain will take place in Q1 related to our thematic priorities: stigma, access and empowerment. These will serve to bring together key partners in each area with a view to building towards a conference in Q4 2021. Ongoing check-ins with supporting policy makers, awareness raising and ad hoc advocacy actions will take place throughout the year.

Development of e-learning modules on personalised healthcare in neurology, leading up to active involvement in and an event at the EAN Congress 2021 on the patient perspective on precision medicine.

Appointment of a Patient Engagement Coordinator to develop terms of reference for neurology patient involvement with key stakeholders and organise capacity building initiatives and events to enable same. This will include, for example, an event in partnership with ERA-NET Neuron on patients as reviewers.

Focus on advocacy and awareness of Neuro-Covid: ensuring the impact of Covid on the neurology community is highlighted, and that neurology is central to programmes and policies to be developed as part of the recovering planning efforts. This will include an EU-level event.

Advocacy Awards 2021 – rewarding efforts in the area of stigma – and the launch of the EFNA grants scheme to support activities to tackle stigma in neurological disorders.

Celebration of EFNA’s 20th birthday throughout the year!