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First Global Hidradenitis Suppurativa (HS) Report Launched

23 May 2024

Offers first globally comparable data on the epidemiology of HS

A report offering a comprehensive overview of Hidradenitis Suppurativa (HS), including its diagnosis, impact and treatment, has been produced by Global Hidradenitis Suppurativa Atlas (GHiSA), an international non-profit organisation working to advance awareness and knowledge about HS. It has been produced in collaboration with and with the support of the International League of Dermatological Societies (ILDS), which has 214 Member organisations from 103 countries and represents more than 200,000 dermatologists worldwide.

HS is a non-communicable, chronic skin disease characterised by the formation of painful and prominent skin nodules and abscesses in intertriginous areas. As well as being itchy, the foul-smelling suppuration that emerges from the nodules and the scarring they cause, can result in a significant reduction in patients’ quality of life as many are stigmatised and socially isolated. According to GHiSA, such is the distress caused that some consider taking their lives.

The report offers a comprehensive overview of HS and explores the gaps, barriers, and issues limiting a greater understanding of its global epidemiology. These include a lack of consensus on HS prevalence worldwide, diagnostic delays, limited understanding of its prevalence by sex, race, and ethnicity, and insufficient data on comorbidities. The report also covers emerging treatments and global efforts to improve management of the disease.

In highlighting the severe impact of HS on patients, the report aims to guide policy makers and stakeholders, such as the World Health Organisation, in allocating resources and improving healthcare for patients.

Click to read the report

Its publication heralds the launch of a major three-phase project by GHiSA to highlight the impact of what is regarded as a neglected and misdiagnosed disease, and to address the challenges to improved knowledge and treatments going forward.

GHiSA seeks to improve the management of HS through global collaboration and research and to provide epidemiological insights that pave the way for enhanced global healthcare interventions. Phase One of its project will gather systematic and prospective HS prevalence data from approximately 50 countries across six continents as part of a Global Prevalence Study. It will use this data in Phase Two as the basis for developing core criteria for future epidemiological studies. In Phase Three, GHiSA will conduct additional epidemiological studies on HS, investigating phenotype, genotype, environmental factors, lifestyle habits, and comorbidities.

The GHiSA team works in collaboration with the ILDS and patient organisations, including GlobalSkin – the International Alliance of Dermatology Patient Organizations, Patientforeningen HS and research collaborators C3/Historic and HS Progress. Funding for the project has been provided by a grant from the ILDS, with support from UCB.

Professor Gregor Jemec, Professor of Dermatology at the University of Copenhagen and Chair of GHiSA said:

Professor Gregor Jemec

HS is a high-impact disease yet one that is under-recognised, frequently misdiagnosed and, as a result, neglected. In producing this report, GHiSA is taking a first step towards plugging the knowledge gap in order to encourage greater recognition of the severe impact it has on patients and to accelerate the development of further therapeutic options. We hope the report will demonstrate to stakeholders that strong and urgent action is required to tackle HS and that their involvement is required to improve the lives of patients worldwide. We’re grateful to all those who have helped us to deliver this report, in particular the ILDS. While there is still much work to do, its completion is a major milestone. We hope it will be a valuable resource for everyone working in this area and pave the way for a brighter future for all those living with HS.

ILDS President, Prof Henry W. Lim said:

Henry Lim_Headshot

Our Grand Challenges in Global Skin Health initiative addresses the significant burden of skin diseases worldwide by focusing on research, education, clinical application and support at local, national and international levels. We have already supported the development of Atlases for Psoriasis and Atopic Dermatitis, and are supporting the development of an Atlas for Vitiligo. We are now delighted to be working with GHiSA as it seeks to improve the lives of individuals affected by HS and we congratulate them on the publication of this important report.

The report is available for free download here. It is also available on the WHO Knowledge Action Portal on NCDs.

For further media information, interviews or images, contact: Rebecca@georgepr.com