Webinar: Improving care of rare disease patients in Europe

#RareDiseaseDay takes place every year on the last day of February with the aim of raising awareness of rare diseases across the world. The European Reference Network for Rare Neurological Diseases (ERN-RND) are marking the occasion by holding a webinar focusing on improving care of rare diseases patients, specifically rare neurological diseases.

The webinar will provide 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.

Topic: “Improving care of rare disease patients in Europe”

Date: Tuesday 23 February 2021 from 3:00pm to 4:00pm CET

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

Confirmed speakers:

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.

Registration is compulsory. You can sign up here.

Leave a Reply

Your email address will not be published.