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Driven by Patient Value, Not Numbers

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    At UCB, we believe the greatest needs can’t always be measured in numbers. We don’t see patient population sizes, we see people in need. Whether a severe disease impacts many people or a few, our goal is to help provide what patients value so they can achieve their best, whatever that means for them. This ethos is ever present around Rare Disease Day – this year on the rarest day, Leap Day 2020 – as we join the rare disease community to raise awareness and support for people living with rare diseases.

    Through decades of serving the neurology and immunology communities, UCB has improved lives with the development of targeted medicines that make an impact and support programs for the communities we serve. As a continuation of this heritage, we are looking to support underserved patient populations living with rare neurological and immunological diseases where current treatment options offer little hope. This includes patients with rare immunoglobulin G (IgG) autoantibody-mediated autoimmune diseases – such as myasthenia gravis (MG), immune thrombocytopenia (ITP) and chronic inflammatory demyelinating polyneuropathy (CIDP) – who may experience symptoms that can be unpredictable, life-limiting and even life-threatening.

    MG, for example, is a chronic neuromuscular condition where the body’s immune system mistakenly targets the connection between the nerves and the muscles, leading to muscle weakness and fatigue. We’ve been particularly motivated by the MG community and have learned about the extent to which MG symptoms can affect patients physically, socially and emotionally. One MG patient described her experience as lonely and isolating – not being able to breathe or speak well enough to talk to a loved one on the phone, or see well enough to read.

    UCB is focused on finding ways to improve the experience and quality of life for people suffering from these IgG-mediated diseases. We are continuing to use patient insights to inform our scientific advances and to build solutions that will deliver value so people living with these debilitating diseases can live their fullest lives.

    This Rare Disease Day, UCB employees around the world are rallying together to participate in global and regional advocacy and policy events. We’re taking the time to listen and learn from patients, advocacy groups and the community – an area we’re committed to not just on this awareness day, but all year long. When we take time to truly listen, understand and partner with people living with rare diseases, we can help provide value that makes lives better beyond just treatment.

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Posted by Charles E. Kimple, 02 March 2020 Thank you for your advocacy and information. I have had CIDP for the past 7 years and have received IVIG every 6 weeks. I have a concern that
the disease is progressing into something different. I will be going. To Cleveland Clinic tomorrow for second opinion with a Neuromuscular
Neurologist.