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Harnessing knowledge and partnership to improve lives of people living with Myasthenia Gravis

Donatello Crocetta, UCB Rare Disease Organization
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Donatello Crocetta, UCB Rare Disease Organization

In MG, increasing the evidence and knowledge will help bring better solutions for those living with this debilitating rare disease.

Like many individuals living with a rare disease, people with Myasthenia Gravis (MG) can experience high medical and non-medical needs, presenting challenges for themselves, their families, healthcare systems and wider society.

As a rare disease, knowledge about MG amongst the general population is low. Compared to more common illnesses, people are less likely to know someone living with MG. The same is often true amongst non-specialist clinicians, many of whom may never treat an MG patient during their career. Because of this, wide-spread understanding about this rare neuromuscular disease is limited, with relatively few centres of excellence and around the world compared to other spheres of specialty medicine. 

At UCB, we strongly believe in contributing to and improving the evidence base for MG, improving the knowledge and understanding of this rare and debilitating disease. For us, this is a fundamental foundation in being able to make changes that address the unmet needs of people living with MG, and ultimately, helping them to live the life to which they aspire. 

An important part of achieving this goal is partnering with the MG community to listen to and elevate their voice. Whether though educational initiatives, participation in medical, scientific or advocacy meetings or engaging directly with patient and clinical experts, we are extremely proud of our record of working with the MG community.

Over the last eight years, we have gathered evidence and insights about this rare disease in partnership with the MG community. This includes pioneering published research highlighting the real-world lived experiences of patients with MG across the globe, alongside perspectives of the global MG community on the barriers, challenges and opportunities to improve awareness, diagnosis and management of MG.

This research has flagged insights which have helped shape the way in which we engage and communicate with the community, as well as broadened our understanding about an MG patients’ journey. For example, MG patients reported contracting over 14 different types of specialists – including neurologists, primary care physicians and ophthalmologists - at some point in their care. It has also helped us to appreciate the extent to which, beyond managing the symptoms of the disease,  living with MG can impact factors such as employment and early retirement; assistance of a caregiver for daily living and Quality of Life.

During this MG Awareness Month, we excited to be able to shine a spotlight on some of the activities taking place around the world to raise awareness about MG. We are proud to be able to demonstrate the depth and breadth of knowledge which has helped to shape our research and decision making, and we are excited to continue to share more important findings and insights that we hope might contribute to transforming patients’ lives. 

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