Generating renewed value in odd treasures in flea markets and antique stores across Paris is my passion. I often sell them in charity sales for rare disease organizations and hope that one day I can do the same for people living with myasthenia gravis (MG). In my day to day, I serve as the Global Patient Engagement Lead for MG at UCB, but my journey with rare diseases began long before I joined UCB. People living with MG, their families, and caregivers are the true unsung experts of MG, and it’s important we listen and collaborate with them closely to ensure the optimal care. My introduction to myasthenia gravis dates to 2008 while working at EURORDIS, the European Organization for Rare Diseases. As the Director of Public Health Policy and the leader of the RARE 2030 Foresight Study, we were supported by evidence gathered on the care and treatment experience of thousands of patients including those living with MG to propose a policy framework in Europe. Since moving to UCB, I’ve made great efforts to incorporate what I’ve learnt from the non-profit sector and use it to shape our patient engagement efforts. An example of this is our Rare Disease Connect Network (RDCN) program, which was an educational platform for physicians at its inception, but now welcomes patient advocates as experts within the group, fostering a global and inclusive network advocating for MG. Throughout my career, my roles have always emphasized empowering individuals to advocate for themselves and consolidating evidence to influence change. I am honored to have the opportunity to spend invaluable time connecting with people living with the disease where I’ve witnessed first-hand the great efforts that they have had to make to lead a seemingly normal life. Sometimes, we might have the impression that people are managing just fine with some supportive care, but what we don't see behind the scenes is an enormous amount of energy and effort for people with MG to show up every day. It’s these real-world connections that allow me to deeply empathize with the MG community, and motivate me to do my best in helping to improve the daily lives of those living with MG. I am continuously inspired by people with MG who have to navigate their lives with true resilience and strength and to constantly adapt to the demands of this invisible disease. With MG being a multifaceted disease, it is important we take a holistic approach to improving the standards of care. In my role at UCB, I remain in regular close contact with MG advocacy organizations that support with multiple projects, including focusing on optimizing the MG diagnosis pathway, digital innovations that help capture data in MG, and the lived experience of MG for certain populations, as an example. We've established several regular activities, bringing the community together to ultimately increase our understanding of MG and ultimately our capacity to make a real difference. Myasthenia gravis is a marginalized disease in our common healthcare system, and current healthcare frameworks are not built to support this rare disease. That’s why I have made it my own personal mission to challenge the people that I work with and in the broader healthcare field to be more aware. Our healthcare systems need to change, society needs to evolve, and I think anyone who sees the evidence would understand that.
