- The inaugural UCB Hidradenitis Suppurativa (HS) Summit will bring people living with HS, caregivers, advocacy leaders, and invited healthcare providers together on UCB’s Atlanta campus to advance understanding of the HS treatment journey and unmet needs
- The UCB HS Summit will amplify the Make HStory educational campaign, which offers resources and support for those living with hidradenitis suppurativa and treating healthcare providers
- Renowned dermatologist and TV personality Dr. Sandra Lee will attend and speak at the Summit
ATLANTA, Aug. 16, 2024 /PRNewswire/ — UCB, a global biopharmaceutical company, today announced its inaugural Hidradenitis Suppurativa (HS) Summit, which aims to provide a community forum for shared dialogue about HS, a dermatologic disease that remains both underdiagnosed and often misdiagnosed.1,2 Dr. Sandra Lee, a board-certified dermatologist known for her presence as a TV star and dermatology influencer (Dr. Pimple Popper), will attend and speak at the event.
The UCB HS Summit, taking place at UCB in Atlanta on August 17, 2024, will feature expert- and patient-led panel discussions focused on the HS journey and various physical and psychological aspects of living with the skin condition. The Summit amplifies UCB’s Make HStory program, the company’s disease-state education campaign that provides tools and resources for those living with HS and their dermatologists.
People living with HS, including Make HStory patient ambassadors (“HStory Makers”), caregivers, patient influencers, advocacy leaders, and invited healthcare providers are expected to attend. Influencers will be able to engage with the interactive elements of the Make HStory campaign.
Dr. Lee will moderate a session on honest and effective office interactions with Dr. Steve Daveluy, dermatologist at Wayne State University Department of Dermatology and HS Foundation board member, and Jasmine Espy, founder and CEO of The Association of Hidradenitis Suppurativa and Inflammatory Diseases (AHSID). They will discuss perspectives from dermatologists and HS experts, with the goal of helping to break down barriers and encourage meaningful conversations between people living with HS and their care team. Dr. Lee chose to support UCB efforts in raising awareness and educating patients and HCPs at the HS Summit after receiving an uptick in inquiries related to HS.
“In my practice, I’ve seen the significant impact HS can have on patients––not only physically, but also emotionally and on their quality of life overall,” said Dr. Sandra Lee. “It’s wonderful to see more attention on HS and companies like UCB invest in disease-state education initiatives like Make HStory and the HS Summit. The more we can shed light on this complex disease, the more we stand to help those living with HS, both those who have received a diagnosis and those who are not yet diagnosed.”
HS is a chronic, complex, and debilitating inflammatory skin disease that impacts approximately one percent of the population in most studied countries, and large unmet needs remain.3,4 The average time from symptom onset to diagnosis is 10 years, with more than three misdiagnoses along the way, which can result in the disease progressing to more severe HS, particularly for those with aggressive progression.2
“At UCB, patients’ experiences and the unmet needs that persist within patient communities guide our approach to scientific innovation. The UCB HS Summit and Make HStory disease-state education campaign serve as testament to UCB’s ongoing commitment to improving the lives of millions of people living with inflammatory diseases like HS,” said Camille Lee, Head of U.S. Immunology, UCB. “We are excited to feature an experienced dermatologist, Dr. Lee, who has a unique ability to engage with patients and dermatologists alike to empower people living with HS and to inspire more patients to have meaningful discussions with their physicians.”
UCB is proud to contribute to advancing the understanding of HS and is committed to continuing its mission to address unmet needs for those living with this disease. To learn more about UCB’s commitment to patients impacted by dermatologic diseases,
visit UCB-USA.com/innovation/dermatology.
Notes to editors:
UCB HS Summit Agenda
- Making HStory Today: HS Fireside Chat: The current state of HS care in the United States – Featuring Brent Hazelett, HS Foundation Chief Executive Officer; Brindley Brooks, Co-Founder & Executive Director, HS Connect; Dr. Jeffrey Stark, Head of Medical Immunology US, UCB; Rhonda Peebles, Head of Dermatology US, UCB
- Making HStory Together: Honest & Effective Office Interactions: Perspectives from dermatologists and HS experts to help break down barriers and encourage meaningful conversations between people living with HS and their care team – Featuring Dr. Sandra Lee, Board-certified Dermatologist & Influencer (Dr. Pimple Popper); Dr. Steve Daveluy, Dermatologist at Wayne State University Department of Dermatology and HS Foundation Board Member; Jasmine Espy, Founder and CEO of The Association of Hidradenitis Suppurativa and Inflammatory Diseases (AHSID)
- Making HStory in Care: Navigating the Treatment Landscape & Patient Journey for HS: Patient influencer and HCP discussion on HS management techniques and treatments, including having good conversations between patients and providers – Featuring Dr. Jenny Hsiao, Associate Clinical Professor of Dermatology at the University of Southern California and Member of the HS Foundation; HStory Maker Mario Otero
- HStorical Narratives: HS & Mental Health: Patient influencer discussion on how HS has impacted their mental health – Featuring Brindley Brooks, Co-Founder & Executive Director, HS Connect; HStory Makers Cydney Carter, Joey Torre, Liz Tassey
- Nourishing Change: Making HStory with Health & Wellness: Patient influencer discussion on how nutrition and lifestyle can play a role in HS management – Featuring HStory Maker Leia Ali; Logan Hawk, Marketing Specialist, UCB
About Hidradenitis Suppurativa (HS)
Hidradenitis suppurativa (HS) is a chronic, recurring, painful, and debilitating inflammatory skin disease.3,4 The main symptoms are nodules, abscesses, and pus-discharging draining tunnels (channels leading out of the skin), which typically occur in the armpits, groin, and buttocks.3,4 People with HS experience flare-ups of the disease as well as severe pain, which can have a major impact on quality of life.3,4 HS most commonly develops in early adulthood and affects approximately one percent of the population in most studied countries.3,4 Approximately one-third of people with HS have a family history of HS, and lifestyle factors such as smoking and obesity can also play a crucial role in the clinical course of HS.3,4
The symptoms of pain, discharge, and scarring are not only a physical burden. People with HS also experience stigma: worrying about or directly experiencing negative attitudes and reactions from society in response to their symptoms.5 These feelings can lead to embarrassment, social isolation, low self-esteem, and sexual life impairment, and impact all areas of life, including interpersonal relationships, education, and work.2
About Make HStory
Created in partnership with individuals living with HS and their dermatologists, UCB’s Make HStory disease-education campaign features stories of those living with HS, informational videos, and interactive tools and resources for those seeking management options, daily care, and information about HS. Engaging both dermatologists and patients with information about HS helps ensure that key facts critical to improving diagnostics, care, and management can be incorporated in patient care, whether raised by a patient or their provider. By encouraging patient and dermatologist conversations, Make HStory aims to help increase understanding of the disease and empower patients to have conversations with their dermatologist about management options. To stay up to date on the latest HS resources, visit https://www.makehstory.com/ and follow Make HStory on Instagram at @MakeHStory and on Facebook at www.facebook.com/makehstory.
For further information, contact UCB:
U.S. Communications
Nicole Herga
T +1 773.960.5349
email [email protected]
About UCB
UCB, Brussels, Belgium (www.ucb.com) is a global biopharmaceutical company focused on the discovery and development of innovative medicines and solutions to transform the lives of people living with severe diseases of the immune system or of the central nervous system. With approximately 9,000 people in approximately 40 countries, the company generated revenue of €5.3 billion in 2023. UCB is listed on Euronext Brussels (symbol: UCB). Follow us on Twitter: @UCBUSA.
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References
1 Ingram JR. The epidemiology of hidradenitis suppurativa. Br J Dermatol. 2020 Dec;183(6):990-998. doi: 10.1111/bjd.19435. Epub 2020 Sep 3. PMID: 32880911.
2 Kokolakis G, Wolk K, Schneider-Burrus S, et al. Delayed Diagnosis of Hidradenitis Suppurativa and Its Effect on Patients and Healthcare System. Dermatology. 2020;236:421–430.
3 Jemec GBE. Clinical practice. Hidradenitis suppurativa. N Engl J Med. 2012;366(2):158-164.
4 Sabat R, Jemec GBE, Matusiak L, et al. Hidradenitis suppurativa. Nat Rev Dis Primers. 2020;6(1):18.
5 Koumaki D, Efthymiou O, Bozi E, et al. Perspectives on Perceived Stigma And Self-Stigma In Patients With Hidradenitis Suppurativa. Clin Cosmet Investig Dermatol. 2019;12:785–90.
SOURCE UCB
