More than 200 dermatologists, advanced practice providers, HS advocacy leaders, caregivers, and people living with hidradenitis suppurativa (HS)—a chronic, painful, and potentially debilitating inflammatory skin disease^1-2—came together on our UCB campus for a day of shared learning at the third annual HS Summit.

This year’s theme, “the PowerHouSe,” reflects how this tight-knit community of patients, providers, advocates, and caregivers has become one of the strongest driving forces for progress in HS. The PowerHouSe is all about patients and providers “getting real,” in a space where they can “talk to each other, not past each other” to close gaps in HS understanding and need.

A Conversation Worth Having

I led a panel discussion with Chaquira Andrade, LCSW, Patient Advocate Director & Secretary of Inflamed Sisters Thriving; Brindley Brooks, Founder and CEO of HS Connect; Jasmine Espy, Founder and CEO of The Association of Hidradenitis Suppurativa and Inflammatory Diseases (AHSID); dermatologist Dr. Jennifer Hsiao; and Jeffrey Stark, MD, UCB U.S. Head of Medical Immunology, setting the tone with a candid conversation on the nuances and sentiments that often get left out in conversations between patient and provider. Panel participants shared courageous and deeply personal stories about living with HS, creating a powerful discussion that highlighted the daily realities of the disease and reinforced the importance of advancing patient-centered care, access, and support. Patients, HCPs, caregivers, and advocates huddled around tables together to talk through questions like:

•    What was the biggest hurdle in getting diagnosed? 
•    What are patients' hopes for the next generation of the HS community? 
•    What could we do together to elevate support, care, and outcomes? 
 

HS affects approximately 1% of people in the U.S. but is widely under-recognized.^1-4 With symptoms that can include nodules, abscesses, and pus-discharging draining tunnels—sinus tracts leading out of the skin—severe pain and flare-ups can take a major toll on quality of life.^1-2 Several breakout groups touched on the need to continue driving broader understanding and awareness. 

“It's very important that I share my story because there are a lot of patients out there like myself who are still suffering in silence,” said HS patient advocate Jawan E. “I'm just thankful for us to have the opportunity to be in these spaces to share our stories and share our voices because this is much bigger than me.”

Dr. Jamie Weisman, dermatologist and HS specialist, commented on the impact of the event that has grown year-over-year, “The growth in the community, the amount of support these HS warriors have for each other, the excitement, the support that they feel from UCB in sponsoring the Summit and bringing everyone together is—it's just honestly, it's just thrilling.”

Beyond the Summit

The HS community, through partnering in initiatives like UCB’s educational campaign MakeHStory and through independent advocacy efforts, has helped drive awareness of this disease, fostering greater exploration, connection, research, and education. 

At this year’s Summit, we aimed to further empower and amplify community voices with a podcast studio and video storytelling opportunities, a live music stage, and photobooths. Throughout the day, attendees moved between these and other interactive stations, collecting knowledge, experiences, and often, content for their social media pages.