As we return from our summer break and face into a busy four months to year-end, we thought this would be a good opportunity to fill you in on what EFNA has been up to this year. Work hasn’t stopped because of Covid. In fact – it’s been busier than ever! So scroll down to see some highlights from what’s been happening and take note of some events and activities still to come…
A new direction…
In the early part of 2020, governance and strategy took a front seat for EFNA, with work underway on an updated Constitution to ensure full compliance with new Belgian legislation. This coincided with the creation of EFNA’s new Strategic Plan 2020-2025, which was approved by a virtual meeting of our General Assembly in May. You can read the plan here.
EFNA also organised two webinars on the topic of Covid-19, the first exploring the impact of Covid on the neurology community and the second focusing on how we can advocate to ensure the challenges and opportunities faced by our members are addressed. These high-level webinars included representatives from the World Health Organisation, European Commission and well-known advocacy groups. You can view the recordings here.
EFNA is also the only patient organisation represented at the global Neuro-Covid Forum of the World Health Organisation and is actively participating in the working group on the continuation of essential services.
Of course, we have also been actively representing our membership in virtual meetings, events and consultations to ensure the voice of neurology patients is heard during and after the pandemic.
Our #BrainLifeGoals awareness campaign continued this year. The focus in 2020 has been ‘Stigma’ and during Brain Awareness Week in March we launched a major survey to identify how and when the neurology patient community experiences stigma. With over 1,300 responses, this eye-opening survey will inform our work on this topic in the years to come. The results of the survey were published on World Brain Day. You can read the full report here.
Following on from the survey results, we have launched a call to collect examples of best practice in ‘Action on Stigma’. Selected projects will receive the EFNA Advocacy Award in 2021. Find out more here.
Also, as part of the campaign this year, EFNA’s #BrainLifeGoals grants scheme saw 10 projects receive funds of €3,000 each to support their work on the topic of ‘access’. See our list of recipients and their plans here, or check out report from our 2019 recipients.
MEP Interest Group on Brain, Mind and Pain
Unfortunately, the MEP Interest Group on Brain, Mind and Pain was unable to meet, so far, in 2020. However, we took this opportunity to review our approach. A steering committee, with support from Weber Shandwick, has been performing a landscape analysis to assess policy challenges and opportunities in the public health sphere – which has changed due to the pandemic. The group will create a two-year Roadmap to Action which will be launched at a virtual meeting of the Interest Group on November 10th.
Making Neurological Health a Global Priority
Building on meetings with the World Health Organisation in 2019, this year EFNA really stepped up efforts to push for neurological health to become a global priority.
This started with a meeting at the European Parliament in February, which had the patronage of influential MEPs from across the political spectrum. We also enjoyed high level participation in a full plenary room – including a presentation from the Director of WHO’s Department on Mental Health, Substance Use and Neurological Disorders. Read the report here.
Following this event, a multi-stakeholder workshop was convened to discuss how we can advance neurology as a public health priority. The outcome was a call for coordinated action. So, this summer, with the help of a Communications Consultant and a Policy Specialist, we have been working on our advocacy messaging and strategy. A two-year strategy, along with an associated advocacy toolbox, will be launched at a virtual workshop on November 27th.
EFNA has also written a number of open letters and articles on this topic in 2020. All are available to read here.
Online capacity building …
Training Initiatives for Neurology Advocates
Unable to host our planned face-to-face workshops, EFNA is now working on building a series of e-learning modules that will be launched in November 2020 and will focus on ‘effective advocacy in a virtual world’.
Note: Our planned workshop at ‘The Power of the Patient-Physician Partnership’ became a virtual session during our General Assembly and the outputs will now be taken forward as part of a joint EFNA-EAN Taskforce on Patient Involvement.
And lots more …
In 2020, EFNA published two position papers spinning out of our Training Initiatives for Neurology Advocates workshops in 2019. Read them here:
Consultations, Correspondence and Communication
In 2020, EFNA re-launched its new Policy Bites newsletter – a resource for EFNA members (and their members) with a focus on important policy developments in our field. EFNA also continues to send our general e-zine to a growing distribution list on a bi-monthly basis.
To stay in the loop, make sure you follow us on social media:
Outside of our own communications, we have also actively contributed to consultations, such as:
- consultation on updates to the WHO Global mental health action plan
- participated in Patient Access Partnership (PACT) joint statement consultations on COVID-19 – Leaving no-one behind, now and in the future.
- coordinated input to the EU project led by EBC: Shared European Brain Research Agenda
- contributed to EPF’s Response to the EU’s Beating Cancer Plan Public Consultation
- contributed to the NCDA survey on implications of Covid-19 on NCDA members & NCD Alliances
- submitted amendments proposals to the EU4Health legislative proposals
- submitted EFNA’s statement to the WHO European Programme of Work
We have maintained our ambitious programme of external representation – even if now virtual – and have added new partners as we joined the EU Health Coalition and the EU4Health Citizens Initiatives. EFNA is now also a member of the NCD Alliance and attended their annual summit in Sharjah in February.