UCB at AAN 2021: A patient-led analysis on the experience of living with MG | UCB
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UCB at AAN 2021: A patient-led analysis on the experience of living with MG

Kenza Seddik, Rare Disease Patient Experience Lead
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Kenza Seddik, Rare Disease Patient Experience Lead
At UCB we put patients at the heart of everything we do. In order to improve outcomes for patients, we need a deep understanding of their current experience of living with their condition, especially in rare diseases such as MG. In collaboration with my colleague Veronica Porkess, I am thrilled that we have been able to collaborate with patients to present a detailed patient-led analysis of the lived experience of MG as a poster at this year’s American Academy of Neurology (AAN) annual meeting.

The journey began 2 years ago, when we started to collect insights about the lived experience with MG, including hearing patients’ stories directly from them. We soon realised that the published literature did not fully reflect the day-to-day reality of living with MG.

In order to better understand the lived experience we partnered with an international patient council comprised of nine local/national patient advocates in seven countries throughout Europe and the U.S. These experts identified the most relevant of the 114 insights previously gathered from multiple sources, with each council member representing the experiences of fellow patients in their country. Finally, we worked with two members of the patient council, Nancy Law (of the Myasthenia Gravis Foundation of America) and Kelly Davio, to consolidate the feedback and develop this patient-led analysis into a publication.

This process reflects UCB’s vision of being “Inspired by patients, driven by science”, as well as our determination to raise the voices of patients with rare diseases.

We hope this analysis provides pivotal insights into the reality of living with MG and that this will support healthcare professionals to improve understanding and management of this rare and often debilitating neuromuscular disease.

The focus on patient perspectives at AAN will continue during a UCB-sponsored virtual symposium “Journey to the Cause”. In this session James F. Howard, Jr., of the University of North Carolina at Chapel Hill and Saiju Jacob, from the University Hospitals Birmingham, UK will trace the clinical features of rare autoimmune neuromuscular diseases, including MG, back to their origins in the immune system, and one of the abstract authors, Nancy Law, will share her first-hand experience of living with the disease. The symposium will be hosted virtually on Tuesday, April 20 at 9:00-10:00 a.m. EST.

With over 20 years of heritage in the research and development of drugs in neurological disorders, we are bringing the same committed approach to our work in rare disease. Our goal is to meet the needs of those often left silent, unrecognized, or misunderstood by their rare condition. Understanding firsthand the experience of living with a severe neurological disease, such as MG, is core to our commitment in developing and delivering solutions to help shape individualized treatment and care for patients.

Thank you to all members of the patient council who contributed to the analysis, our patient authors (Kelly Davio and Nancy Law), as well as Melissa Blunck (UCB Pharma) and Dawn Lobban (Envision Pharma Group) whose tireless efforts made this possible.

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Posted by Rachael Conway, 26 April 2021

Brilliant Kenza - you are a constant inspiration and source of energy in keeping us focused on identifying and meeting the unmet needs of individual patients :-)