29 February 2020, a rare day, will be the thirteenth international Rare Disease Day.
Many activities are organized in more than 100 countries to raise awareness amongst the general public and decision-makers about Rare Diseases and their impact on patients’ lives.
The EAN, since its foundation, expressed a very great interest for Rare Neurological Diseases, that represent more than 50% of the total number of Rare Diseases, giving to neurologists an important role as regards diagnosis, patient care and research.
A Task Force for Rare Neurological Diseases was created, that recently was transformed into a Coordinating Panel on Rare Neurological Diseases, a stable EAN structure, having representatives from each Scientific Panel as core group members, and individual members (FEAN, full, corresponding and resident individual members) with an interest in this field, coordinated by a Management committee. The names of the panel members can be found on the EAN website.
The elections of the Management Committee took place in January and the results are reported in the table. The EAN Board has the opinion that there should be a smooth transition from the Task Force to the Coordinating Panel and therefore appointed Professor Antonio Federico as a third ex-officio Co-Chair,
Management group members:
|Rare Neurological Diseases||Co-chair||Marianne||de Visser (The Nederlands)|
|Rare Neurological Diseases||Co-chair||Giuseppe||Plazzi (Italy)|
|Rare Neurological Diseases||Ex officio Co-Chair/ Past Chair*||Antonio||Federico (Italy)|
|Rare Neurological Diseases||Member||Jean-Marc||Burgunder (Switzerland)|
|Rare Neurological Diseases||Member||Kailash||Bhatia (Great Britain)|
|Rare Neurological Diseases||Member||Antonio||Toscano (Italy)|
|Rare Neurological Diseases||Member||Anita||Arsovska (North Macedonia)|
*for the duration of one year
This new EAN Coordinating Panel will continue the work done by the EAN Task Force raising awareness on Rare Diseases amongst European Neurologists. Furthermore, the Panel will stimulate more research but also strive for harmonization of care across the different European Countries.