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The hidradenitis suppurativa (HS) Patient Partnership Summit: Empowering voices, uniting community

Posted by
Danuta Marchi, External Engagement, Immuno-Dermatology and Rheumatology


In an unprecedented demonstration of solidarity and vision, the HS Patient Partnership Summit (15-16 April 2024) marked an important milestone in the hidradenitis suppurativa (HS) community’s efforts to address this chronic and painful disease. For two inspiring days, twenty representatives from HS patient advocacy groups around the world gathered to make connections, share knowledge and co-create together.

A community united by empathy and purpose

The UCB-organized and funded Summit began with an atmosphere charged with empathy, as attendees shared their personal experiences of living with HS. Each story was a testament to the courage and determination that define the HS community. These narratives laid the groundwork for discussions that traversed the spectrum of patient care, from the challenges faced in securing an accurate diagnosis to the innovative approaches to treatment and support. We were reminded that people living with HS are not alone.

Shared knowledge to drive meaningful change

Participants shared their triumphs as well as the hurdles they’re trying to overcome in both advocacy and awareness-raising efforts within the HS community in order to learn from each other and advance their objectives. We heard how these advocates have illuminated the way forward through initiatives that empower patients and foster a deeper understanding of HS.

The importance of correct information

The critical need for correct information about HS was a resonant theme across all discussions. It was agreed that accurate information empowers patients to seek appropriate care, guides effective management and shapes the perceptions and understanding of the wider public to help overcome stigma. It’s the cornerstone upon which better health outcomes are built. 

Paving the way forward

A collaborative spirit was palpable, as plans for future initiatives to increase global awareness and advance patient care took shape, marked by a commitment to collective action and patient-centered advocacy. The next steps are clear, we need to educate, gather data and, most importantly, empower patients to advocate for their care.

A pioneering spirit to address HS

The HS Patient Partnership Summit was more than an event—it was a clarion call to action and a demonstration of what can be achieved when empathy meets collaboration. As the summit concluded, participants clearly felt that this is just the beginning. The seeds of change were planted, ready to grow into a movement that promises to transform the landscape of HS care and advocacy.

Together, we look to the future with the pioneering spirit of the summit, ready to make our shared hope and vision a reality for the HS community around the world.

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