The European Brain Council (EBC), in collaboration with the Institute of Management of Scuola Superiore de Sant’Anna, is pleased to launch the ‘Rethinking Myasthenia Gravis’ Advocacy Paper on the occasion of EBC’s Rare Disease Day event, held on February 24th, 2026 in Brussels. Rethinking Myasthenia Gravis (MG) is a research-driven project that will offer policy recommendations to make tangible changes with the aim to improve the lives of people living with Myasthenia Gravis across Europe.
About Myasthenia Gravis
Myasthenia Gravis (MG) is a rare, clinically heterogeneous, autoimmune disorder of the neuromuscular junction characterised by fatigable weakness of voluntary muscles. Myasthenia Gravis (MG), like many other rare diseases, suffers from a lack of wider understanding around the challenges it presents despite affecting over 700.000 people living with MG worldwide.
For decades people living with MG suffered from inadequate standards of care and the R&D landscape was largely dormant. Recently, there has been an increased influx of attention for Myasthenia Gravis. This is due to both a clearer sense of patient reported unmet needs, as well as the advancements in science in the field of auto immune and neuromuscular diseases such as Myasthenia Gravis. In light of these arising opportunities, such as the expansion of tailored care and treatment, a concerted effort between stakeholders is required to consolidate the current understanding and optimise the management of Myasthenia Gravis for patients and caregivers.
About the Advocacy Paper
This advocacy paper synthesises cutting-edge evidence with the lived experience of patients, caregivers, and healthcare professionals across several European countries. Its message is clear: rethinking MG care requires faster and more accurate diagnosis, robust multidisciplinary care aligned with a brain health approach, equitable access to innovative therapies, and meaningful integration of digital tools and patient-experienced data. MG can serve as a test case for how Europe organises care for rare diseases—demonstrating how coordinated, patient-centred systems can be built. Strengthening MG care pathways and policies will not only benefit those living with MG but also help advance more inclusive approaches for other rare neurological and neuromuscular disorders. Together, we can turn high-level commitments into tangible improvements for people living with MG and those who care for them every day, by acting on the recommendations set out in this paper.
Recommendations are advocacy-driven and aim to help policymakers, healthcare providers, payers, and patient organisations reduce diagnostic delay; embed multidisciplinary, person-centred care; enable equitable, evidence-informed access to innovative therapies; address socioeconomic and psychosocial burdens; and accelerate meaningful, co-designed digital transformation.
Collectively, these actions can support the operationalisation of global and European commitments on rare diseases and neurological disorders in the specific context of MG, while positioning MG as a test case for brain health–oriented care in rare diseases across Europe.
Key Recommendations
• Reduce diagnostic delay and misdiagnosis
• Embed multidisciplinary, brain health-oriented care pathways
• Ensure equitable, evidence-informed access to innovative therapies
• Address socioeconomic and psychosocial burden for patients and caregivers
• Harness digital tools and data for better MG management
The project “Rethinking Myasthenia Gravis” is kindly supported by Alexion and UCB Pharma. All outputs are non-promotional and not specific to any particular treatment or therapy. Neither company provided content input to this publication, and it does not represent an official endorsement by Alexion or UCB.