Can collaboration transform care in rare diseases? UCB's mission in community-driven digital solutions

At UCB, our mission is deeply rooted in understanding and addressing the unique challenges faced by people living with severe diseases through innovative collaborations that enhance patient care. Our commitment extends beyond traditional treatment methods, focusing on partnerships that drive forward-thinking solutions and achieve our goal of elevating the standard of care.

Managing a rare disease such as generalized myasthenia gravis (gMG) is complex, but through community collaboration with patient organizations, healthcare professionals, and health tech companies, we can address challenges more effectively. UCB is dedicated to empowering the gMG community and sees the potential to integrate the insights and experiences of those living with gMG, to support solutions that are not only innovative, but also sustainable and may contribute to long-term improvements in the healthcare landscape for rare diseases.

gMG is a chronic disease with a range of symptoms – as a result, several aspects that impact patient quality of life can often be underestimated, including fatigue, emotional impact, and difficulties in swallowing or speaking.^1,2 UCB sought to support the identification of symptoms through collaboration with the patient community, culminating in the development of the MG Symptoms PRO (MGSPRO) tool, which provides a quantifiable means of assessing gMG symptoms, aligning with patients' lived experiences³ and paving the way for the development of enhanced management strategies.³

Another challenge for people living with rare diseases like gMG is that they often have to cope with fluctuating and unpredictable symptoms. Nearly half of all gMG patients continue to suffer from persistent, difficult to manage symptoms⁴ , highlighting the critical need for enhanced treatment strategies. Longitudinal data plays a vital role in this evolving healthcare landscape, providing essential insight for developing effective management approaches.

Doctors need continuous patient data, consistent and objective measurement of symptoms and timely access to this information to gain a deeper understanding of individual patient experiences and aim to deliver optimal care.

This is precisely the goal of the collaboration between UCB and Huma .

In addition to empowering people living with gMG with greater understanding of their condition, the aim of the HumaMG solution is to assist healthcare providers in offering more personalized and effective patient care. Huma’s platform - approved as a ClassIIb SaMD in EU, FDA 510k ClassII cleared in the US^5,6 - is also a strong enabler of this vision for more advanced personalization and remote care.

We are focused on sustainable innovation and UCB is setting the pace in terms of actively investing in innovative technology, emphasizing our commitment to leading-edge solutions. Our strategy is anchored in progressive partnerships with digital health experts, to support the development of technologies that enable people living with gMG to report objective data crucial for managing their condition.

Building on the novel alliances in digital health that we have forged with partners sharing our vision of holistic care, we have established technological foundations and community involvement and are now entering the scaling phase. We believe this phase represents the right moment to collaborate and drive systemic change for gMG patients and beyond. We encourage the rare disease community to join forces, including patient organizations, healthcare professionals, and health tech companies, to support and engage with initiatives that promote innovative, collaborative, and patient-centric care solutions. Your involvement is crucial if we are to achieve the necessary scale for sustainable impact in rare diseases that will ensure that every patient’s journey is met with empathy, support, and optimal care.

Learn more about how we are harnessing digital technology to support our mission to make a lasting impact in the lives of those living with rare diseases. Together, we can achieve more than we can alone.