Our work to serve patients living with rare diseases isn’t easy because those living with rare diseases and ultra-rare diseases often feel forgotten, unheard or misunderstood as their disease affects so few that many of them wonder if others can understand what they might be going through, or care about what they need.

Team UCB cares.

This year, for #RareDiseaseDay2025, we are sharing what fuels our passion and purpose in consciously engaging with empathy for rare disease patients. We are using our voices, UCB Voices, to help raise awareness about the challenges of living with ultra-rare and rare diseases.

Read more about #UCBVoices of #TeamUCB on LinkedIn.

Just like the journey of every rare disease patient is unique, every one of us here at Team UCB has a personal story to tell about their commitment to the rare disease community. Each of us aims to strive individually to create value for rare disease patients now and in the future. We intend to see the patient, not only the disease, and to put the patient front and center to elevate the lives of the rare diseases communities that we serve.

In fact, UCB’s journey in rare diseases began with the personal experience of a UCB scientist whose wife was living with a rare autoimmune disease. He was inspired by his wife’s experiences, and frustrated with available treatment options. He took his frustration and turned it into drive and innovation. Supported by UCB leadership, he applied his expertise to help improve the care and support for those like his wife.

While our passion and purpose start off with the individual person, collaboration is firmly embedded into our activities.

I am also pleased to announce the U.S. edition of Aspire4Rare. Aspire4Rare is a project co-created with a multi-disciplinary group of nine experts in rare diseases from policy, health, research, and patient advocacy backgrounds across Europe and the U.S. that aims to strengthen health systems for people living with rare diseases. This partnership-led initiative seeks to enhance rare disease strategies, whether it is addressing geographic and societal inequalities or tackling emerging issues in genomics, health data, and workforce. Aspire4Rare is focused on real and practical action.

So, let’s take real and practical action on Rare Disease Day 2025 and reaffirm our dedication to the care and support of this underserved and underrepresented community – to be able to support even more rare disease patients in 2025, and beyond.

Let’s continue to build momentum towards putting Patient-First in everything that we do because it is that Patient-First mentality that drives our innovation to serve the rare disease community.

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