Register here
for the first webinar via MS Teams
Date
5th of May 2025, 18:00-19:30 CEST
Topic of the webinar
Join us for an insightful webinar organized by ECMTF and ECRA, where we delve into the vital role of patient organizations in the lives of those affected by Charcot-Marie-Tooth (CMT) disease. This event will explore the following topics:
- Patients in Action: Discover what CMT patient organizations offer to you as a patient.
- Empowering Patients: Learn what patients can do for their organizations.
- Patients as Partners: Understand the concept of "patients as partners" and its validity.
Speakers
- Filippo Genovese: Representing ACMT-Rete and ECMTF, Filippo Genovese brings a wealth of experience and dedication to the CMT community. His insights into patient advocacy and organizational support are invaluable.
- Alexandre Hoyau: As a key figure in CMT France, Alexandre Hoyau has been instrumental in fostering patient engagement and support. His perspective on the collaborative efforts between patients and organizations will be enlightening.
- Ingolf Pernice: From DGM, Ingolf Pernice offers a unique viewpoint on the integration of patients as partners within organizations. His expertise will shed light on the practical applications and benefits of this concept.