Hidradenitis suppurativa: raising awareness, championing advocacy and advancing care

Imagine, for a moment, a health condition that remains largely unknown yet profoundly affects the lives of approximately one percent of the population in most studied countries. -  Hidradenitis suppurativa (HS), though seldom making headlines, is an inescapable reality for those living with this painful, chronic, recurring, and potentially debilitating skin disease.

HS is believed to arise from a complex interplay of genetics, lifestyle and inflammatory responses, perpetuating a relentless cycle of inflammation.  It often manifests as painful nodules, abscesses, draining dermal tunnels and scarring. These symptoms can lead to physical limitations that can, in turn, diminish quality of life and impact relationships and career, among other things. 

Despite recent progress, there remains a high level of unmet needs within the community. Challenges include low levels of awareness, lengthy diagnosis delays and often restricted access to specialist care.

June 3rd to 7th marks HS Awareness Week 2024, an annual event dedicated to raising awareness and deepening understanding of this disease. At UCB, we embrace this opportunity to unite with the HS community this week to raise awareness, dispel misconceptions and champion advocacy.

Raising awareness
UCB’s ambition is to transform the lives of people living with severe disease. The road to transformation starts with awareness, knowledge and understanding. As part of this, UCB is implementing HS awareness initiatives with healthcare professionals and patients around the world. For HS Awareness Week 2024, we are also pleased to present a succinct compilation of facts about this often-overlooked skin disease. Discover more below. 

Championing advocacy
In the United States, UCB supports the HS Coalition, which aims to transform the HS landscape by promoting policies that can improve the lives of individuals with HS. The HS Coalition seeks to bring together the best minds and ideas to drive awareness, address disparities and improve outcomes for all impacted by HS.

Additionally, UCB commissioned and funded an initiative on HS with The Health Policy Partnership. This initiative brought together an international, multidisciplinary steering committee comprising patient representatives and healthcare professionals with the aim of raising awareness of the burden of HS and the barriers faced by people with the condition along the entire patient pathway. The Health Policy Partnership has published an international report, titled Call to action: improving the lives of people with hidradenitis suppurativa, developed based on a comprehensive literature review and interviews with both people living with HS and healthcare professionals.

To co-create solutions and advance understanding of the disease, we also collaborate with HS patient organizations. In addition, our partnership with myHealthTeam has helped to support a vibrant social network for those living with HS, which helps to foster connections within the community.

Advancing care
At UCB, we are committed to raising the standard of care for HS. HIDRACENSUS 7.3 is an expert-led, insight-based program in Europe that is sponsored by UCB. This pioneering multi-stakeholder program is led by a steering committee and aims to support educational needs, with the overarching goal of improving outcomes for people living with HS. The program engages with all stakeholders involved in the care of people living with HS, to be a truly holistic and informed initiative.

In addition, UCB and Stanford Medicine have established a multi-year collaboration aimed at transforming the lives of people living with HS. This collaboration fuses expertise with clinical insights, real-world, omics and other data sets, and advanced technologies, to deliver better patient outcomes.

This HS Awareness Week and every week UCB is proud to unite with the global HS community to raise awareness and foster understanding of this disease. Awareness weeks such as these are a powerful reminder of the challenges faced by people living with HS. Together, let’s make a positive difference and create a brighter future for everyone.  

Click on the picture to open the infographic