The ERN-RND webinar which took place on 23 February brought together different stakeholders from the rare disease and neurological community to give their perspective on care for rare disease patients in Europe and how it can be improved.
This webinar was part of the Rare Disease Day 2021 campaign which takes place across February each year with the aim of raising awareness of rare diseases and their impact on people’s lives amongst the general public and decision makers. In 2021, Rare Disease Day is taking place on 28 February.
The following speakers gave a short presentation:
– 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
Click here to view the recorded webinar.