Myasthenia Gravis in Europe: An EU Perspective
29. Nov 2022 — Register Here
**This is a EUCOPE Member’s Event
Myasthenia gravis (MG) is a serious, rare, and chronic neuromuscular autoimmune disease that can cause debilitating and potentially life-threatening muscle weakness. It affects 56,000 to 123,000 people in Europe. On November 29, patients, HCPs and policymakers will discuss the burden of disease in different EU countries and how harmonised and integrated European policies that improve the lives of MG patients and their caregivers can be implemented.
To address these challenges, patient organisations, supported by argenx, have joined forces to organise a series of patient and caregiver workshops to collect new empirical data on the burden of MG, and to develop new, concrete recommendations on how their needs should be addressed. In the context of current discussions on the need for a coordinated EU rare disease strategy, these recommendations look in particular at how MG could be better incorporated in national rare disease strategies and care pathways, and how European exchanges and collaboration on best-practices could be encouraged to address the substantial differences that remain between EU member states. They also put the focus on the need to better recognise the specific needs of informal caregivers of rare disease patients in light of
the Commission’s recent EU Care Strategy, which has been proposed to member states.
To present these findings and recommendations, you are invited you to join the online high-level conference on 29 November from 17:00 to 19:30 for a pan-European discussion with patient representatives, senior clinicians, regulators and policymakers.