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.
NEWS, ACTIVITIES & ACHIEVEMENTS
The European Federation of Neurological Associations (EFNA) is an umbrella group representing 20 pan-European neurology patient groups. In 2022 the group celebrated 21 years of empowering and integrating the neurology patient voice in Europe.
In 2022 EFNA conducted a survey on ‘Assessing diagnosis and care pathways of people living with neurological disorders in Europe’ with the aim of identifying, reporting and beginning to address the varied challenges facing all affected by neurological conditions, either as patients or caregivers, from diagnosis to care pathway.
The key finding of the survey was that only 1 in 5 of those living with a neurological condition have access to affordable therapeutic interventions that satisfactorily manage their condition. Results also suggest that there are nuances to gender equity in neurology, most notably that females are less encouraged to visit a doctor, while being more aware of their symptoms and more engaged in research. EFNA looked more deeply into these gender differences during a webinar in early October, ‘Addressing Gender Equity in Neurological Care’.
The topic was also addressed during November’s meeting of the MEP Interest Group on Brain Mind and Pain (BMP), held under the patronage of the Czech Presidency of the Council of the EU, entitled ‘Addressing Gender related issues and bias in the Prevention and Treatment of Neurological Conditions’. The event’s main objective was to discuss how the Interest Group can advance meaningful policies and interventions to address the drivers of gender health inequity.
Two new e-learning series of EFNA’s ‘Training Initiatives for Neurology Advocates’ were launched during 2022. The first, ‘Communications for Patient Advocacy’, is divided into three modules – (i) Communicating with impact, (ii) Communicating persuasively and (iii) Presentation skills for public speaking. The second series is on the theme of research, and features a further three modules, on the topics (i) Patient and Public Involvement in research, (ii) Overcoming the barriers to clinical trials access and (iii) Data generation: Surveys to support policy and advocacy.
The modules are video-based and divided into sections that can be watched independently at times that suit the viewer. Each module includes supporting notes, as well as the option to take a quiz on the content and receive a personalised certificate of completion. Courses are in English, but subtitles in other languages can be enabled.
EFNA has continued running the secretariat for the OneNeurology Partnership, working to raise the priority of neurology at global fora. This translated into various activities spanning communication and advocacy activities. Most notably, OneNeurology met in Geneva with Director of the WHO Mental Health and Substance Use Department, as well as members of the WHO Brain Health Unit and several health attaches in Geneva missions.
Plans for 2023-2024
Brain Health for Neurology
With much of the neurology community feeling further neglected from the recent shift to a focus on Brain Health as opposed to neurology, EFNA is pursuing through all workstreams a focus on prioritizing and including all of neurology under the context of Brain Health and associated policy initiatives frameworks.
Brain Awareness Week: Social media campaign on Access for Neurology March 13th-17th 2nd Round Table on Brain Health: From Understanding to Action May 4th Amsterdam MEP IG on Brain Health and Neurological Conditions Meeting May 23rd Brussels (date TBC)
EFNA continues as the secretariate for the OneNeurology Partnership, strengthening the partnership and ambassador profiles to continue engaging with the WHO with Director of the WHO Mental Health and Substance Use Department, as well as members of the WHO Brain Health Unit, and the NCD department, and MS missions. A particular focus is collaboration with WHO on the development of advocacy tools to support the implementation of the IGAP, and the neurology global status report. A meeting of the OneNeurology Partnership will take place in Q3 to reflect and report on progress across the globe following 1 year of the IGAP.
Inclusion across Neurology
With over 90% of people affected by neurological conditions experiencing stigma, coupled with mis-communications and understanding of research and policy initiatives around brain health, it is important to unite the neurology community in and inclusive way. The first step is to raise awareness of all types of neurological conditions through strategic and continuous awareness campaign.
Brain Health Blog Awareness Campaign (Monthly)
Each month EFNA will profile 1-2 brain health blogs for people living with Neurological Conditions to share their story, and outline what brain health means for them. Where possible brain health blogs will be posted and shared at strategic dates for example, Feb 28th rare disease day will profile Leda Bresnov representing NMOSD, and Eva Frostell representing Myasthenia Gravis.
Webinar: Striving for optimal brain health living with a neurological condition (To be posted and remain on the EFNA website from July 22nd) World Brain Day
The webinar, in line with the brain health blogs, will highlight many issues people living with neurologic conditions face such as education, employment, reproduction, optimizing treatment and care long term, stigma, discrimination, and isolation- and examples of some solutions to these challenges.
Stronger Connected: Interactive map resource (May 2023)
A mapping of the members of EFNA’s membership began last year. This year we will build an interactive map to show in each country across Europe the organizations you can connect with independently or through EFNA, and where there are national neurological alliances. This resource will support individuals or groups identifying potential collaborators for united national neurology policy asks. This map will sign post via links to the toolkit guide for neurological alliances, and a platform of policy hook updates.
Toolkit for Neurological Alliances for united advocacy in support of the implementation of the IGAP and other policy hooks. (May 2023)
EFNA recognizes that across Europe every country is different and each potential alliance may have varying needs and interests. Rather than providing detailed instructions on how an alliance should be set up and managed, this guideline provides examples of how different alliances have been created and operate. Existing alliances provide their thoughts on what they have found works well, potential challenges that might be met along the way and tips for getting started. In addition, this guide features the views of member organizations, the key stakeholders of alliances, as well as from the policy-maker, the pivotal target for the work of alliances. Furthermore, this toolkit provides a kick-start example of how neurological alliances can utilize the adoption of the IGAP to support their unique priorities.
Empowerment for Neurology Patients and Advocates
EFNA will host and In-person Workshop on “Advocacy for Neurological Alliances” (Dublin Q4 2023)
Part 1 of the workshop will showcase by example of case studies such as the NAI the benefits of collaborative action when addressing policymakers on major issues such as neurology. Part 2 of the workshop will provide guidance by reflecting on examples of how to establish neurological/brain health plans at governmental level, working through three case studies- Norway, the Netherlands and Germany.
A New TINA series: The Intersectoral Global Action on Epilepsy and Other Neurological Disorders (iGAP)
Module 1: The Intersectoral Global Action on Epilepsy and Other Neurological Disorders (iGAP) – An Overview
Module 2: Strategic objectives and the associated targets of the Intersectoral Global Action on Epilepsy and Other Neurological Disorders
Module 3: Advocating for implementation of the iGAP at National level
Additional TINA modules will also be added to the Research Series to make data work for the neurology community-EU-HDS, registries, VOT
Patient Involvement in HTA processes-A Round Table MEP IG BHNC meeting (Brussels) Q4