Last week EFNA attended the 4th European Academy of Neurology (EAN) Congress in Lisbon, along with more than 6700 neurologists! Once again, EFNA took this opportunity to bring together our members for our annual General Assembly.
On Day 1 we heard from our members. Under the headings Discovery, Dream, Design and Destiny, they described their organisations’ main areas focus and what EFNA could do to help them progress.
Daniela Shikova, General Manager at the FindMeCure Foundation, was guest speaker on the day, and presented an exiting platform that offers information on and access to clinical trials worldwide.
Day 2 saw the group participate in an interactive ‘World Café’ style workshop, focusing on the areas of membership and fundraising. Participants had the opportunity to both seek and provide new ideas as to how EFNA and our members can advance our work more effectively.
EFNA participated in a number of events outside the General Assembly. A Huntingtons Disease Awareness Session was held on Saturday 16th, in association with EFNA member the European Huntingtons Association and the European Huntingtons Disease Network.
Together with the EAN and the European Brain Council (EBC), EFNA also hosted a special session on Monday 18th, examining the ‘Value of Treatment of Brain Disorders’, highlighting the example of Restless Legs Syndrome (RLS).
EFNA’s stand at the Congress this year was themed around young people living with neurological disorder. Initial results of our recent survey of 18 – 35 year olds were presented through posters and flyers. Direct quotes from survey participants were used to highlight the things that would most improve their lives. We are calling these #BrainLifeGoals! Visitors to the stand had an opportunity take a photo and share their #BrainLifeGoals with us.
Assisting us at the stand were three fantastic young patient advocates; Adam Kalinowski (Board Member at Dystonia Europe), Barbora Jones (Fieldworker at Epilepsy Connections) and Helen Chandler (MS Advocate, representing EMSP).
Helen gave a presentation entitled ‘Health, Wealth and Workability; Young People and MS’ at the Scientific Theatre during the Congress. You can read her story here.
It was an extremely fruitful few days in Lisbon at the EAN Congress. Thanks to outgoing EAN President, Prof. G Deuschl for his support of the patient voice throughout his term. We look forward to continued collaboration with his successor, Prof. F Fazekas and ongoing liaison via Eveline Sipido!