EVENTI

Il 29 novembre, pazienti, operatori sanitari e responsabili politici discuteranno sullo stato dell'arte della Miastenia Gravis nei diversi paesi dell'UE e di come possano essere attuate politiche europee armonizzate e integrate che migliorino la vita dei pazienti con MG e dei loro caregiver.

La miastenia grave è una malattia neuromuscolare autoimmune grave, rara e cronica che può causare debolezza muscolare debilitante e potenzialmente letale. Colpisce da 56.000 a 123.000 persone in Europa

Form di registrazione

Programme

Opening speech

Introduction and presentation of the event by Tomislav Sokol, Member of the European Parliament, Croatia

Keynote speech

Presentation on the burden of disease for MG patients, based on exclusive real-world data by Francesco Saccà, Professor in Neurology at the University “Federico II” of Naples

Roundtable 1:  Myasthenia gravis’ impact on patient and caregiver lives: similarities and differences across EU Member States

Discussion between MG patient association representatives and medical experts from different EU Member States such as:

Belgium: Lutgarde Allard, Board Member of Liga MG, and Jean-Marie Huet, President of ABMM

Italy: Renato Mantegazza, President of AIM and professor of the Department of Neuroimmunoly and Neuromuscular Diseasesa

Spain: Raquel Pardo, President of AMES

Germany: a representative from DMG (to be confirmed)

France: Béatrice Nectoux, on behalf of the Myasthenia Interest Group of AFM-Téléthon and AMIS

Roundtable 2 Shaping harmonised and integrated European policies that improve the lives of MG patients and their caregivers

Discussion between national and European policymakers, MG patient association representatives and medical experts

Conclusion of the discussion and next steps by Jean-Philippe Plançon, Chairman of EPODIN and Vice-president of Alliances Maladies Rares