Rethinking myasthenia gravis: Bridging gaps and creating lasting change

Empowering Patients to Lead the Charge

People living with myasthenia gravis (MG) live and breathe the complexities of their condition every day. For this reason, at UCB, we believe that the patient voice is as important as any other healthcare stakeholder. By partnering with the MG community, and with other similarly motivated and driven stakeholders we aim to drive meaningful, lasting change. Rethinking MG embodies this spirit of collaboration and innovation and UCB is proud to be co-creators and co-sponsors of this initiative. 

Building Momentum with Rethinking MG

Rethinking MG is a 2-year multistakeholder research-driven project offering policy recommendations to make tangible changes with the aim to improve the lives of people living with Myasthenia Gravis across Europe.

Historically, MG was a disease with a poor prognosis, however, with increased focus and attention and many new opportunities for improved treatments, we are starting to make a difference and gaining a deeper understanding of unmet needs. The Rethinking MG project is about joining forces, consolidating learnings, and breaking down silos between stakeholders to create a unified front.

Driving Policy Change for a Brighter Future

We are proud to be working with and supporting the European Brain Council and its partners on Rethinking MG, which is poised to make a difference. Our goal is to develop actionable policy recommendations that amplify the voices of those living with MG. The project will focus on three core principles: highlighting the socio-economic burden of MG, optimizing the patient care pathways for MG from both the patient and clinician perspectives, and inspiring health policies through MG community involvement.  A key component is recognizing that much of the knowledge needed to address the challenges of MG is available but scattered across various sources. 

By creating a platform that includes diverse perspectives—such as those from patients, healthcare professionals, organizations, that support patients and neurologists across Europe, researchers, and health economists—we can provide a comprehensive 360-degree view. This holistic perspective will allow us to truly rethink the way we care for and treat people with MG, ensuring that our approach is informed, inclusive, and reflective of all stakeholders' insights. Additionally with key European advisory board members that include professional societies and patient advocacy groups, we have a tremendous opportunity to raise awareness amongst both non-specialist healthcare professionals and patient groups across Europe and beyond. 

At the launch of Rethinking MG during the Rare Disease Day event ‘Towards a Rare Brain Disease Ecosystem’ earlier this year, I had the privilege of introducing these principles. Sharing the industry perspective in a room full of deeply passionate and motivated stakeholders was a pleasure, and reinforced the vital need to present a unified message to policymakers and rethink how we can improve the lives of people living with MG. 
 

Raising awareness is not enough. We need to ‘rethink MG’. To learn more about Rethinking MG, visit the European Brain Council website.