Bringing together the best minds, research, and ideas to drive awareness, address disparities, and improve outcomes for all impacted by hidradenitis suppurativa (HS).

Our Mission

Transform the HS landscape by promoting policies that can improve the lives of individuals living with HS.

Bringing people together

We bring together experts, healthcare professionals, advocacy leaders, and those with lived experience to promote positive policy changes in the U.S. healthcare system.

Addressing disparities

Because HS disproportionately impacts Black and Biracial people, we seek to ensure timely access to care and diagnosis to reduce treatment disparities for everyone living with the disease.1,2

Research and policy

We emphatically believe that better policies and improved research can transform lives in the HS community, and we are committed to creating opportunities to facilitate those changes.

3.3m

People in the US are living with HS1

21y

MEAN AGE OF HS ONSET3

25%

OF PATIENTS ARE DIAGNOSED BEFORE AGE 255

What is HS?

Hidradenitis suppurativa (HS) is a chronic, stigmatizing, and debilitating skin condition that affects approximately 1 in 100 individuals in the United States.1,4

Beginning as painful lumps under the skin in various areas of the body where there are hair follicles or where friction can occur, including armpits, groin, buttocks, and breasts,2 deeply seated lesions may develop into odorous pus-filled abscesses and can grow to the size of a golf ball in some cases.2

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Latest HS News & Insights

Featured Insight

Hidradenitis Suppurativa –
A Patient and Advocate’s Journey

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Resources

Discover a library of current resources and information for individuals with HS, their families, and for those studying the disease.

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Barriers to Accessing Timely and Adequate Treatment, Care, and Resources for Patients With HS in Select US States

Depending on which state they live in, US-based patients with HS face different challenges to accessing care, given delay in diagnosis and restrictive insurance policies. These differences compound the existing health inequity in HS.

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References

  1. Nguyen TV, Damiani G, Orenstein LAV, Hamzavi I, Jemec GB. Hidradenitis suppurativa: an update on epidemiology, phenotypes, diagnosis, pathogenesis, comorbidities and quality of life. J Eur Acad Dermatol Venereol. 2021;35(1):50-61.
  2. Ballard K, Shuman VL. Hidradenitis suppurativa. In: StatPearls [Internet]. Treasure Island, FL: StatPearls Publishing. January 2023. Last updated April 17, 2023. Accessed January 2, 2024. https://www.ncbi.nlm.nih.gov/books/NBK534867/
  3. Naik HB, Paul M, Cohen SR, Alavi A, Suàrez-Fariñas M, Lowes MA. Distribution of self-reported hidradenitis suppurativa age at onset. JAMA Dermatol. 2019;155(8):971-973.
  4. Snyder CL, Chen SX, Porter ML. Obstacles to early diagnosis and treatment of hidradenitis suppurativa: current perspectives on improving clinical management. Clin Cosmet Investig Dermatol. 2023;16:1833-1841.
  5. Analysis of data extracted from Real Chemistry's IPM.ai multi-payer real-world claims dataset (IPM.ai. Integrate Claims (https://www.ipm.ai/). Includes patients with a code for HS (ICD10: L73.2, ICD9: 705.83) included on ≥2 claims, and at least one claim from December 2021‐December 2022.