This summer, EAN signed a Memorandum of Understanding with our colleagues at the European Federation of Neurological Associations [EFNA].
EFNA brings together European umbrella organisations of neurological patient advocacy groups, to work with other associations in the field of neurology on ensuring that the patient perspective in central to decisions taken around neurological healthcare policy and provision.
This MoU will strengthen the collaboration between EAN and EFNA, whilst promoting the organisations as the leading societies for neurologists and neurological patients’ representation in Europe.
EFNA and its members are already quite active and visible within the EAN. This is especially apparent at the Annual Congress where EAN provides EFNA with a stand in the exhibition area to profile their work. This year the stand was used to draw the attention of delegates to EFNA’s Together Under the Umbrella campaign. This initiative aims to raise awareness of the impact and prevalence of brain/brain-related disorders. For more, see: www.undertheumbrella.eu
However, EFNA uses its presence at the Congress to do more than just set up a stand. They also coordinate an annual joint Special Session on a theme of mutual interest and a Public Day for local patients – both using speakers drawn from within the EAN leadership. This year the special session theme was: Open Dialogue – Let’s Talk about Sleep, Stress and Sex, featuring Professors Oertel and Vodusek. The Public Day focused on Huntington’s Disease.
EFNA, too, holds its General Assembly during the Congress programme. This ensures that its members are in attendance and can then participate in the scientific panel meetings that take place during that time. EFNA is also represented on the EAN’s Training & Education and Liaison Committees.
Reciprocally, EAN is also involved in EFNA’s work. Recently, this included contributions to EFNA’s Member of the European Parliament Interest Group on Brain, Mind and Pain. The mission statement of this policy forum at the European Parliament is to: Encourage research into and access to innovative treatments, promote prevention and self-management approaches, decrease stigma and work together to improve quality of life for people living with these disabling conditions. See: www.brainmindpain.eu
EAN is also active in the steering committee for EFNA’s upcoming Training Initiatives for Neurology Advocates. This initiative, supported by Trinity College Dublin, will provide neurology patient advocates from across Europe with information, skills and tools they need to participate in and influence the decision-making processes in Research and Development but also, beyond, in areas like Health Technology Assessment.
As many of our readers will be most interested in learning, not just about EFNA as an over-arching patient organization, but about the work of its members who operate in specific disease areas – we have added this new section to the newsletter.
Each month, we will introduce you to a new pan-European neurology patient organization and their work. We hope that these articles will allow you to better understand and collaborate with the relevant patient organization working on areas of mutual interest in your specialist disease area.
First up will be the European Headache Alliance, so keep a look out in the next edition to learn more about their European Migraine Day of Action (September 12th annually) and their What’s Under the Hat? awareness campaign.
For more on EFNA, see the article below on their Annual Report 2015.
You can also visit: www.efna.net or follow them on Twitter at: @EUneurology