Kathi was experiencing unusual and recurring muscle weakness that led her to seek answers from her doctor, who ultimately diagnosed her with generalized myasthenia gravis.  She shared, “I didn’t want to accept the diagnosis, so I pushed it out of my mind. But it started getting more difficult to walk and function in my day to day, and I knew I couldn’t ignore it anymore. I realized, looking back, that myasthenia gravis had been slowly impacting my life even before my diagnosis – it took longer for me to walk to meetings. I started skipping my afternoon coffees because it was too long of a walk. I was being robbed of things slowly over the years and didn’t know who the robber was.”  
 
People living with rare diseases, such as Kathi, experience complex journeys that can make it challenging to find the right support at the right time. 

Kathi’s story, and that of other rare disease patients, remain at the heart of everything we do. At UCB, we always see the person, not just the disease, and consider how we can accelerate access to care and support for people living with a rare disease. 30 million people are living in the U.S. with a rare disease.¹

For Kathi, her focus is on spending time with her family, and her grandchildren are her world. At UCB, we pursue the understanding of these kinds of personalized stories and how they fit within the wider ecosystem of care and support for people living with a rare disease.

On this Rare Disease Day, we remain steadfast in our ambition to deliver a portfolio of differentiated solutions to create patient value. We continue to listen to the individual experiences of people living with a rare disease in order to learn about the gaps in their care and support. We remain committed to the discovery, development, and delivery of our solutions that are differentiated to accommodate the diverse needs of people living with generalized myasthenia gravis. 

Read more about UCB’s report on “Collaborating for the U.S. Myasthenia Gravis Community” on the overlooked voices of people living with myasthenia gravis.

References
1. National Institutes of Health. https://rarediseases.info.nih.gov/about. Accessed: February 2024.
 

The content of this article is intended for a U.S. audience only.
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