European Federation of Neurological Associations

❣️🇪🇺🧠 What a great meeting at the European Parliament of our MEP Interest Group on Brain Health and Neurological Conditions where we shared the preliminary results of our Pan-European survey on Invisible issues of #neurological conditions. 🙏 A big thank you to our host, MEP Romana Jerković and everyone attending the meeting and showing support! ✅It was wonderful seeing so many people from different organisations and so many MEPs from across different political groups coming together for this important topic. Thank you MEP Ana Miranda Paz , MEP Ondrej Dostal , MEP Tomislav Sokol, MEP Nina Carberry, MEP Margarita Pisa Carrión and MEP Cynthia Ní Mhurchú for sharing your insights and support! ❣️🇪🇺🧠🙏 A big thank you to all the speakers as well as attendees, it is so important to raise awareness on this topic and shine a light on the invisible issues of neurological conditions. Astri Arnesen Orla Galvin BSc PhD Tadeusz Hawrot Iva Galovic Leila Ali Gracemarie Bricalli Saija Ristolainen-Kotimäki Chantel FOUCHE Anna Revilla Bruñol Henk Lindeman Andra Bria Cathy Molohan Lorraine M Duffy, Ph.D. Julian Spinks Russell Patten John Gerbild Chris Burns Elisabeth Kasilingam Ángela Cano Palomares INTERNATIONAL BUREAU FOR EPILEPSY Mimoza Buqi Elvira Vacas Montero European Pain Federation EFIC EARLS European Alliance for Restless Legs Syndrome EMSP - European Multiple Sclerosis Platform #neurology #health #efna #invisibleissues #brainhealth #neurologicalconditions #patientadvocacy

❣️🧠 Very interesting discussions at Brain Innovation Days, where our president Astri Arnesen discussed about the importance of patient data in a panel "Accelerating Patient Experience Data (PED) Utilisation in Neurology: A Collaborative Approach". #BIDays #neurology

❣️🧠It's great to be at Brain Innovation Days together with some of the members of our Community Advisory Board. Check out first impressions:👇 Astri Arnesen Orla Galvin BSc PhD Anna Revilla Bruñol Cathy Molohan #BIDays #neurology #brainhealth #patientadvocacy

Advocating as a volunteer is not easy. It is learning new skills, absorbing new information, frustration, repeating the same things and sometimes long days with little sleep. It's also very personal. But it is also highly rewarding because it is about meeting passionate people, challenging yourself, great new experiences and successes one small step at a time. And because it’s so personal. At its best, it is empowering, as it was yesterday when I was proud to be part of the amazing team of the EFNA Community Advisory Board at the EU Parliament. I got to hear moving and courageous speeches one after another. Thank you: Anna Jensen (EPNS) John Gerbild (Ataxia Europe) Chantel Fouche (ADHD Europe) Gracemarie Bricalli (EMEA) Elisabeth Kasilingam (EMSP) Angela Cano Palomares (EFIC) Julian Spinks (EARLS) Thank you MEP Romana Jerkovic for hosting the event and thank you to the other six MEPs who attended the event and showed commitment to the invisible issues of neurological conditions. For other MEPs who want to improve the lives of millions, I encourage you show your support here: https://www.efna.net/bhnc/ Thank you European Federation of Neurological Associations incredible team for giving me this opportunity to be a part of this important event. ❤️🇪🇺 Astri Arnesen Orla Galvin BSc PhD Iva Galovic Tadeusz Hawrot #BHNCevent #neurology #rareneurology #EUhealth #HealthPolicy #advocacy #empowerment #EU #Parliament #MEP

Having fun and hopefully making a difference with the team from the European Federation of Neurological Associations at the #BIDays in Brussels. A wide range of talks on ##brainhealth, the importance of #braincapital in driving innovation, and the need for #EU-wide funding and strategies. With 40% of the #EU population impacted by #neurological conditions, we need solutions now!!

We at the European Federation of Neurological Associations (EFNA) wish to express our sincere gratitude to the 7 MEPs who shared their input at yesterday's meeting of the MEP Interest Group on Brain Health and Neurological Conditions, showing how the invisible issues of neurological conditions resonate strongly not only with our patient & carer community but with our policy makers. The event was kindly hosted by MEP Romana Jerković (S&D, Croatia), and attended by MEPs Tomislav Sokol (Croatia, EPP), Ana Miranda Paz (Spain, Greens/EFA), Ondrej Dostal (Czechia, Non-attached Member), Nina Carberry (Ireland, EPP) and Margarita de la Pisa Carrión (Spain, VOX). MEP Cynthia Ní Mhurchú (Ireland, Renew Europe Group) provided a video message. We look forward to working with these MEPs and the rest of our supporters in the coming years to increase awareness, understanding and drive policy change. #BHNCevent #neurology #BrainHealth #invisibleillness #EUhealth #healthpolicy

A thought-provoking and (hopefully) hard-hitting meeting today at the #EU ##Parliament, attended by 7 MEPs who have pledged to fight for better #brainhealth in the #EU. Parkinson's Europe European Federation of Neurological Associations

I attended the European Federation of Neurological Associations meeting of the MEP Interest Group on #BrainHealth & Neurological Conditions. The group aims to drive positive change and foster greater support for those living with neurological conditions. Here are some of my take away points: ▶️ The meeting included real people speaking about their lived experience of living with, or caring for a person with a neurological condition. Addressing the emotional and psychological impact of living day to day with a neurological condition is central to any intervention. ▶️ For children and young people (CYP) health, education and community sectors must collaborate to support the social, emotional, physical and academic wellbeing of CYP so they can reach their full potential. ▶️ People living with neurological conditions and other health conditions must be supported in their health literacy so they can understand what is happening to them physically and emotionally. ▶️ Healthcare professionals must be trained to recognise the invisible effects of neurological conditions and, how to use plain language in their communication with patients and carers. ▶️ Health policy and research must take a multidisciplinary approach which includes the voice and expertise of people with lived experience. ▶️ Policy makers can drive change to foster brain health communities and interventions to help prevent incidences of neurological conditions in the future.

My first visit to the #EU #Parliament today in my role as part of European Federation of Neurological Associations' Community Advisory Board. 🔦 We were there to shine a light on the invisible issues of #neurological conditions and to convince MEPs to pledge their support for better #brainhealth. 🥊It was wonderful to meet my fellow CAB members, each fighting to improve lives of those affected by neurological conditions, from #epilepsy to #stroke and #huntingtons, and many other conditions, and to finally meet the amazing Russell Patten from Parkinson's Europe in person after so many zoom meetings. 🙏 Thank you to MEP Romana Jerkovič for hosting, and to MEPs like Nina Carberry and Tomislav Sokol, among others, for your support. European Federation of Neurological Associations Parkinson's Europe

Thank you European Federation of Neurological Associations for giving me the opportunity to be part of your Community Advisory Board. It was such a pleasure to meet the whole group of advocates in person - to laugh together, to share stories and to share our vision of how we see a world where people living with neurological conditions can be respected and included in a way that helps them live their best life and reach their full potential. #brainhealth #shinealight