For people living with hidradenitis suppurativa (HS), being understood can be just as important as being heard.
That idea was at the center of UCB’s 2026 HS Summit in Atlanta, where patients, healthcare professionals, advocates and industry leaders came together for a day focused on education, connection and the realities of living with HS.
But this was not your typical health conference.
Instead of spending the entire day in meeting rooms listening to presentations, attendees stepped inside UCB’s Power House, an interactive experience designed around different parts of the HS journey. There were opportunities to see what HS can look like beneath the skin through ultrasound, ask questions about navigating treatment and access, share personal stories, create art, customize T-shirts and simply take a moment to relax.
For Charity Williams, Patient Marketing Lead for HS at UCB, creating that kind of environment started with listening to the community.
“This is a community that just has a significant unmet need, and they haven’t had an opportunity to share their stories,” Williams told BlackDoctor.
Rather than relying solely on traditional market research, Williams said UCB wanted to engage directly with the people living with HS and the healthcare professionals caring for them.
“We knew we wanted to engage with the community directly,” she said.
What started as conversations supporting the development of disease education has grown into a four-year commitment to bringing together patients, clinicians, advocates and others connected to the HS community.
One of the most striking things about the Power House was the range of people in the room.
Patients were joined by dermatologists, rheumatologists, advocacy leaders, biologic coordinators and teams from across UCB.
Logan Howard, HS Patient Marketing Lead at UCB, said that same collaboration happened behind the scenes.
“This is honestly not even one of the few, but probably the only event where you have marketing, you have medical, and just patient and HCP teams coming together to put on an event,” Howard said. “You can have the whole community under one roof.”
That was intentional.
“You can’t talk to this community without making sure that everyone has a seat at the table,” Williams said.
A physician understands HS from a clinical perspective. A patient understands what it means to manage pain, drainage, scarring, relationships, work and everyday life with the condition. Advocates see recurring challenges across the community. Bringing those perspectives together creates space for conversations that might not otherwise happen.
The Power House turned much of that education into something attendees could experience.
At the Ultrasound Station, attendees could see what may be happening beneath the skin, reinforcing that HS can involve more than what is visible on the surface.
At the Q&A Genius Bar, attendees could have one-on-one conversations about navigating access, coverage and what may come next after starting treatment.
Other stations focused on life beyond clinical care.
The Creative Craft Corner invited attendees to take a Polaroid, decorate a frame or write a letter to their future selves. At The Flower House, attendees built individual LEGO creations that became part of a larger community landscape.
The Aromatherapy Lab allowed attendees to create personalized scent pouches, while the Zen Lounge provided a place to color, decompress and connect with others.
Each stop came with a collectible pin, turning the Power House into something attendees could explore at their own pace.
Storytelling was another major part of the experience.
At the Power House Podcast, people living with HS could sit down for casual conversations about their lives, questions, challenges and the progress they have seen within the community.
The Wear It Out activation gave attendees another way to tell their stories. Participants could choose a word or quote meaningful to their journey and have it placed on a personalized T-shirt.
The summit also highlighted UCB’s Make HStory disease awareness campaign, which is designed to elevate HS stories and spark more conversations around the condition.
For a disease that can be difficult to talk about, creating spaces where people can openly say, “This is what living with HS looks like for me,” can be powerful.
That message also came through during a performance from singer, songwriter and patient advocate Ali Ramsaier, who lives with HS herself. Her upcoming single, “I Am More,” was inspired in part by her experience attending last year’s UCB HS Summit and reflects a simple idea that showed up throughout this year’s event: people living with HS are more than their diagnosis.
The Power House may only happen once a year, but Williams said the conversations happening inside it help inform work that continues long after attendees go home.
“We take this opportunity to generate the insights for the solutions that we deliver to patients and providers throughout the year,” she said. “While we’re here in this moment, we do so much more after this moment that is kind of ignited from this moment.”
Williams hopes the summit continues to grow because that growth can represent something bigger: a stronger and more connected HS community.
“We hope that it gets bigger because I think the fact that it gets bigger is indicative of how much the community itself has grown and support and investment for the community has grown,” she said.
For an HS community that has spent years pushing for greater awareness, better education and more opportunities to be heard, the Power House offered something important: a place where patients were not simply invited into the conversation. They helped shape it.
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