Hidradenitis Suppurativa Foundation

What Hidradenitis Suppurativa Foundation does

The Hidradenitis Suppurativa Foundation (HS Foundation) is a 501(c)(3) nonprofit organization founded in 2005 by two patients and two dermatologists and headquartered in Cary, North Carolina, that operates as the only US-based foundation exclusively dedicated to hidradenitis suppurativa (HS) — a chronic inflammatory skin condition affecting an estimated 1-2% of the adult US population and approximately 2.5 million diagnosed individuals. Its mission spans three pillars — education, research funding, and advocacy — delivered through an integrated program portfolio: the annual Symposium on Hidradenitis Suppurativa Advances (SHSA) conference with 2,768 attendees; the HS Academy dermatology-resident training program; the HS Papaya mobile app (iOS/Android, launched 2024) for symptom tracking and provider finding; the HS Buddy Program peer-mentorship system; research grant programs (Danby up to $30k, Translational up to $100k, Mentored Experience up to $4k) that deployed more than $325k in 2025; and clinical tools including prior-authorization templates and a 100+ clinic HS specialty provider directory. The HS Foundation does not develop or sell technology products; its assets are content, convening, and grant capital organized around a multi-stakeholder ecosystem.

The organization is funded primarily through a roster of seven disclosed pharmaceutical sponsors (AbbVie, Incyte, Insmed, MoonLake, Novartis, Oruka Therapeutics, UCB) plus individual donations and grants, with industry partnership tiers ranging from financial sponsorship to co-developed educational content such as The Next Chapter video series (MoonLake) and HS Connect events including the Be Seen Brunch (UCB). It is governed by a dermatologist-researcher board and a small paid staff of approximately 4-5 people (CEO Brent Hazelett, Director of Education Lauren Klinedinst, Director of Operations Stephanie Brown, Manager of Special Projects Emily Dennis) under rotating academic-dermatologist presidents, with Dr. Haley Naik assuming the presidency in March 2026. International reach is exercised through co-developed affiliates — the European HS Foundation (formed 2012, Germany) and the Canadian HS Foundation (formed 2014) — and through a 16-country Delphi consensus on HS Competence Centers criteria, though core operations remain US-centric.

Name

Hidradenitis Suppurativa Foundation

Legal name

Hidradenitis Suppurativa Foundation

Website

https://hs-foundation.org

Company type

Private

Founded year

2005

Operating status

Operating

Headcount range

1–10 employees

Short description

The Hidradenitis Suppurativa Foundation is a US-based 501(c)(3) nonprofit that funds research, delivers education, and advocates for an estimated 2.5 million Americans living with hidradenitis suppurativa through conferences, mobile apps, peer-support programs, and pharmaceutical-sponsored grants.

Ownership category

akta.pro rank

Product category

Nonprofit Disease Advocacy and Research Foundation

NAICS

Voluntary Health Organizations (813212), Social Advocacy Organizations (8133), Other Individual and Family Services (624190)

SIC

Services-Misc Health & Allied Services, Nec (8090), Services-Social Services (8300)

akta.pro primary industry

Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS) (BPAGACAA)

akta.pro secondary industries

Health & Medical Research Grantmaking Foundations (BPAGAKAL), Community Health, Prevention & Health Education (BPAGACAC)

Keywords

• Hidradenitis suppurativa research
• Patient advocacy services
• Medical education programs
• Research grant funding
• Nonprofit health foundation

Headquarters

HQ city

Cary

HQ country

United States

HQ region

North America

Offices2 records

Markets served

GTM type

B2C

Offering type

Services

Cost components

Personnel, Operations, Technology or R&D, Marketing or Sales, Others

Revenue model

1. Donations and Charitable Contributions: The HS Foundation is a 501(c)(3) nonprofit organization that relies on donations from individuals, industry partners, and foundations to fund its research, education, and advocacy programs.
2. Industry Partnerships and Sponsorships: Pharmaceutical companies including AbbVie, Incyte, Insmed, MoonLake, Novartis, Oruka Therapeutics, and UCB provide funding and sponsorship support for educational programs, research grants, and events.

Go-to-market motion2 records

Distribution channels6 records

Marketing channels8 records

Core offering

The Hidradenitis Suppurativa Foundation is a 501(c)(3) nonprofit that funds HS research, educates patients and clinicians, and advocates for the HS community. It delivers free educational resources, patient and clinician support programs (including the HS Buddy Program and HS Papaya app), research grants, and an annual international symposium (SHSA). Its offerings are provided at no cost and sustained through donations, industry sponsorships, and grants from pharmaceutical partners.

Product overview

The Hidradenitis Suppurativa Foundation operates a comprehensive digital platform and suite of programs focused on research, education, and advocacy for people affected by HS. The core offering is the HS Foundation website (hs-foundation.org), which serves as a central hub connecting patients, clinicians, and investigators to resources including the HS Papaya mobile app for symptom tracking, the HS Buddy Program for peer support, educational programs (HS Academy for dermatology residents, SHSA annual symposium), clinical tools (Prior Authorization Templates), provider directories (HS Specialty Clinics, Wound Care Clinics), and research funding programs (Danby Research Grants, Translational Research Grants, Mentored Experience Grants). The foundation's product portfolio functions as an integrated ecosystem supporting the entire HS care continuum from patient education through clinical care to scientific research.

Differentiator

Problem solved

Functional benefit

Brands

• SHSA (Symposium on Hidradenitis Suppurativa Advances): Annual international conference for researchers involved with HS
• HS Academy
• HS Papaya App
• HS Buddy Program

Products and services

• HS Papaya Mobile App Patient support mobile application that enables disease tracking, symptom monitoring, trigger recognition, research engagement, and provider finding for people living with HS. Available for iPhone and Android. Developed in collaboration with HS Connect, Hope for HS, HS Warriors, and IAHSN.
• HS Buddy Program

Quantifiable outcome

• More than 2.5 million people in the US have been diagnosed with HS
• +3 more outcomes

Named customers3 records

Segments3 records

Ideal customer profiles3 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

Seven partnerships are on record, tiered core and minor.

• Coalition of Skin Diseases (CSD)coreStrategic or Co-development PartnerThe HS Foundation actively advocates as a member of the Coalition of Skin Diseases, a coalition including over 30 organizations representing over 80 million Americans with dermatological conditions.
• Dermatology FoundationcoreStrategic or Co-development PartnerPartnership to fund a Career Development Award for investigators focused on HS, supporting early-career dermatology researchers.
• Pediatric Dermatology Research Alliance (PeDRA)minorStrategic or Co-development PartnerPartnership supporting the Pediatric HS Challenge Grant focused on research into the mental health burden of HS in children and adolescents.
• HS ConnectcoreStrategic or Co-development PartnerCollaborated on development of HS Papaya app. Patient advocacy organization providing resources, support and solutions to the HS community.
• Hope for HSminorStrategic or Co-development PartnerPatient organization collaborator on HS Papaya app development. Founded in 2013 as the first face-to-face support group in the US for HS patients.
• HS WarriorsminorStrategic or Co-development PartnerPatient advocacy organization collaborator on HS Papaya app development.
• International Association of Hidradenitis Suppurativa Network (IAHSN)minorStrategic or Co-development PartnerPatient organization collaborator on HS Papaya app development. Provides advocacy, education, support, and community to individuals impacted by HS.

Scale indicators7 records

Recent moves8 records

Expansion highlights6 records

Direct peers

• National Psoriasis Foundation: A US-based disease-specific nonprofit focused on research, education, and advocacy for psoriasis patients. Operates a similar model combining research grants, clinical education, patient support, and pharmaceutical partnerships to drive awareness for a chronic skin condition.
• Lupus Foundation of America: A US-based disease-specific nonprofit dedicated to lupus research, education, and advocacy. Comparable structure with research grants, CME, patient navigation, industry partnerships, and a focus on reducing diagnostic delays.
• National Eczema Association: A US-based nonprofit serving the eczema/atopic dermatitis community with research funding, clinician education, and patient advocacy. Closely comparable given overlapping stakeholder base (dermatologists, patients, pharma) and parallel program structure.
• National Alopecia Areata Foundation: A US-based nonprofit dedicated to alopecia areata with research funding, patient support, and clinician education. Highly comparable in size, mission, and stakeholder model to the HS Foundation, both addressing chronic dermatologic conditions with high psychosocial burden.
• Myasthenia Gravis Foundation of America: A US-based disease-specific nonprofit combining research funding, patient education, physician resources, and pharmaceutical industry collaboration. Operates at a similar scale to the HS Foundation with comparable stakeholder structure.
• Crohn's & Colitis Foundation: A leading disease-specific nonprofit with a deep research funding program, clinical education, patient support, and extensive pharmaceutical industry partnerships. Comparable in scale and operating model to a mature version of the HS Foundation.
• Pulmonary Fibrosis Foundation: A US-based nonprofit focused on a rare/chronic disease with research grants, clinician education, patient support, and pharmaceutical partnerships. Comparable in operating model and disease-specific mission to the HS Foundation.

Others

• Society for Investigative Dermatology: A medical professional society supporting dermatology research and education. Not a direct competitor but a peer in the dermatology research ecosystem where both organizations fund research, convene clinicians, and partner with industry.

Broad incumbents

• Asthma and Allergy Foundation of America: A large US-based nonprofit addressing asthma and allergic diseases with research, education, advocacy, and policy work. Comparable in structure and stakeholder model but operates at significantly larger scale across multiple disease states.
• Arthritis Foundation: A large US-based nonprofit supporting multiple disease states under the rheumatic/autoimmune umbrella. Overlaps with HS Foundation on inflammatory disease focus, industry partnerships, and patient/clinician education, but operates at a much larger scale and broader disease scope.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat5 records

Key risks6 records

Key highlights7 records

Customer concentration

• LinkedInlinkedin.com/company/hidradenitis-suppurativa-foundation-inc

Compliance2 records

Revenue estimate

Valuation estimate

Number of profiles

Profiles21 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about Hidradenitis Suppurativa Foundation