2019 was a busy year for EFNA; a time when we began to put the building blocks in place for our new Strategic Plan which will run from 2020-2025.In advance we chose our three advocacy themes for the coming years:
- Fighting Stigma, Isolation and Discrimination•Ensuring Equitable Access to Treatment, Services and Support
- Promoting Patient Empowerment of Increased Involvement
- and Engagement
These themes were reflected in the new policy documents we created for our re-launched MEP Interest Group – which kicked off again in 2019 with a renewed pool of MEP supporters and co-chairs. See page 13.
Our training workshops also covered these themes. With over 100 participants between both workshops, we discussed ‘access’ in October and ‘empowerment: patient involvement in R&D’ in December. These interactive workshops allowed us to discuss challenges and opportunities for neurology patients and the broader community in these areas and to develop two position papers which will guide our work in the coming years. More on page 19.
Our #BrainLifeGoals awareness campaign continued to highlight what matters most to patients living with neurological disorders. It is important that all stakeholders recognise the real needs and preferences of patients so that healthcare systems, services and supports can address these. This really needs to be the basis of what we do – understanding and representing the patient voice. Find out about the initiatives that took place as part of the campaign on page 8.
We also represent the neurology patient voice actively at relevant forums and events. See a list of some of our engagement activities on page 22. We continue to strengthen our cooperation with our key partners at the European Academy of Neurology and the European Brain Council – ensuring the patient perspective is embedded within their growing work programmes in areas such as medical education, research and advocacy.
This year we also stepped beyond Europe. Having noticed that EU priorities were being guided by those at an international level – such as sustainable development goals, universal health coverage, etc. – we felt we needed to ensure that neurology was not overlooked. Following it’s addition in 2018, by the UN, as the 5th big NCD priority area – alongside mental health – we felt that this was not translating into prioritisation and action at EU level. And so we began our journey into this international setting with the objective being to bring about tangible benefits to the patient community in Europe. Read more about this on page 15.
Of course, all of this work would not be possible without our dedicated team, Board Members and sponsors – as well as the commitment of our members and partners. So thank you all for your support in 2019 and we look forward to continuing to work together in the years to come!
Enjoy reading – we’ve captured our 2019 highlights in this brief report to give you an idea of our key activities but do get in touch should you require more detailed information on any of our work. We appreciate your interest!