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ERN-RND webinar: Improving care for rare disease patients in Europe – Rare Disease Day
February 23, 2021
We are pleased to invite you to this ERN-RND webinar on “Improving care of rare disease patients in Europe” as part of the Rare Disease Day 2021 campaign taking place on Tuesday 23 February 2021 from 3:00pm to 4:00pm CET.
Rare Disease Day takes place every year on the last day of February with the aim of raising awareness of rare diseases across the world throughout February. This is why we would like to mark the occasion with a webinar focusing on improving care of rare diseases patients, specifically rare neurological diseases, providing different perspectives: from the clinician to the patient’s perspective and from a European level to a more local one with examples from France, Germany and Hungary.
Objectives of this webinar:
- share different perspectives on care of rare disease patients in Europe
- discuss opportunities and challenges linked to improving care of rare disease patients in Europe,
- raise awareness of Rare Disease Day
– Holm Graessner, coordinator of the European Reference Network for Rare Neurological Diseases (ERN-RND)
– Donna Walsh, executive director of the European Federation of Neurological Associations (EFNA)
– Sophie Bernichtein, project manager of BRAIN-TEAM in France
– Tobias Mentzel, patient advocate at ELA Germany
– Maria Judit Molnar, Professor of Neurology and director of Semmelweis University’s Institute of Genomic Medicine and Rare Disorders, Hungary
Their presentations will be followed by a Q&A.
Participants will include patient advocates, healthcare professionals, healthcare professionals, policymakers, and industry.
Registration is compulsory. You can sign up here.