The European Brain Council (EBC), in collaboration with the Institute of Management of Scuola Superiore de Sant’Anna, was very pleased to launch the ‘Rethinking Myasthenia Gravis’ project on the occasion of EBC’s Rare Disease Day event, held on February 20th 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.
What is the real burden of MG on the society, taking into account the burden for people living with MG, their families and caregivers, the healthcare system, and the different public and private payers? How can care and treatment pathways for MG be optimised from both the patient, their family and healthcare professionals’ perspectives? The project will first focus on highlighting the socio-economic burden of MG, then will address the challenges & gaps of the current care pathway of MG, and finally will design and propose actions to improve the management of MG, such as, for example, the optimisation of the patient care pathway, and of the patient-/healthcare professionals’ communication & disease perception. The policy recommendations will be developed based on an increased understanding of current gaps in the care pathway, with suggested strategies to pursue the improvement of both the quality and the economic sustainability of 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.