Hidradenitis suppurativa
HPP collaborated with patient representatives and clinicians to raise awareness of hidradenitis suppurativa and its wide-ranging effects on quality of life.
Click the CC button on the video player to watch this video with subtitles in English, Danish, Dutch, French, German, Italian, Spanish, Swedish and Japanese.
Context
Hidradenitis suppurativa (HS) is a chronic and painful inflammatory skin condition characterised by recurring nodules and abscesses that can have a notable impact on the lives of people with the condition. Estimates indicate that HS affects around 1 in 100 people.
HS can significantly affect people’s lives. The pain can restrict participation in daily activities such as going to work or playing sports. Physical symptoms can lead to stained clothing and an unpleasant odour that may cause people to experience embarrassment and withdraw from social situations, making them feel isolated. As a consequence, many people with HS experience anxiety and depression.
Long delays in diagnosis, unsatisfactory treatment choices and variable access to multidisciplinary care often prevent people with HS from receiving the timely and high-quality care they need. And, crucially, awareness of HS remains low among healthcare professionals and the public. Addressing this is a crucial step towards improving the lives of people with HS and their families.
Project resources
Country reports
Canada
The report on HS in Canada is available in both English and French.
Call to action: Improving the lives of people with hidradenitis suppurativa (HS) in Canada Améliorer la vie des personnes atteintes d’hidradénite suppurée (HS) au Canada
Denmark
The report on HS in Denmark is available in both English and Danish.
Opfordring til handling forbedring af livet for mennesker med hidrosadenitis suppurativa (HS) i Danmark Call to action: improving the lives of people with hidradenitis suppurativa (HS) in Denmark
France
The report on HS in France is available in English.
Call to action: improving the lives of people with hidradenitis suppurativa (HS) in France
Germany
The report on HS in Germany is available in both English and German.
Call to action: improving the lives of people with hidradenitis suppurativa (HS) in Germany Handlungsbedarf: Verbesserung der Lebens-qualität von Menschen mit Hidradenitis suppurativa (HS) in Deutschland
Italy
The report on HS in Italy is available in both English and Italian.
Call to action: improving the lives of people with hidradenitis suppurativa (HS) in Italy Invito ad agire: migliorare la vita delle persone affette da idrosadenite suppurativa (HS) in Italia
Japan
The report on HS in Japan is available in both English and Japanese.
Call to action: improving the lives of people with hidradenitis suppurativa (HS) in Japan 行動への呼びかけ：日本の化膿性汗腺炎（HS）患者の生活を改善する
The Netherlands
The report on HS in The Netherlands is available in both English and Dutch.
Call to action: improving the lives of people with hidradenitis suppurativa (HS) in the Netherlands Oproep tot actie: het verbeteren van het leven van mensen met hidradenitis suppurativa (HS) in Nederland
Spain
The report on HS in Spain is available in both English and Spanish.
Call to action: improving the lives of people with hidradenitis suppurativa (HS) in Spain Llamada a la acción mejora de la vida de las personas con hidradenitis supurativa en España
Sweden
The report on HS in Sweden is available in English and Swedish.
Call to action: improving the lives of people with hidradenitis suppurativa (HS) in Sweden Dags att agera – förbättra livet för personer med hidradenitis suppurativa (HS) i Sverige
What we’ve achieved
HPP has brought together an international, multidisciplinary steering committee comprising patient representatives and healthcare professionals with the aim of raising awareness of the burden of HS and the barriers faced by people with the condition along the entire patient pathway.
In June 2023, to mark HS Awareness Week, we published an infographic that provides an overview of the impact of HS and the key challenges associated with the condition.
In January 2024 we produced a video in which people living with HS discuss the impact of the condition on their lives. We then published an international report, developed based on a comprehensive literature review and interviews with both people living with HS and healthcare professionals. The report was launched following a webinar on 31 January 2024, featuring expert speakers including people living with HS.
The international report was accompanied by a set of national reports exploring HS in ten countries. We also led the research and drafting of a peer-reviewed paper, co-authored by members of the steering committee, which was published in the British Journal of Dermatology in November 2024.
Key partners and stakeholders
This project was developed with the support of the following steering committee members:
- Professor Falk Bechara, Centre for Hidradenitis Suppurativa/Acne Inversa, Germany
- Silvia Lobo Benito, Spanish Hidradenitis Suppurativa Patient Association (ASENDHI), Spain
- Marie-France Bru-Daprés, French Association for Research on Hidradenitis (AFRH), France
- Angela Gibbons, patient representative, UK
- Susanne De Goeij, Hidradenitis Patiënten Vereniging, Netherlands
- Chevonne Smellie, Hidradenitis and Me, Canada
- Dr Susan Poelman, Canadian Hidradenitis Suppurativa Foundation, Canada
- Professor Francesca Prignano, University of Florence, Italy
- Annette Rosenberg, HS International Sweden, Sweden
- Dr Elia Rosi, University of Florence, Italy
- Bente Villumsen, Danish Hidradenitis Suppurativa Patients’ Association, Denmark
Project funding
This project is led by The Health Policy Partnership (HPP) with guidance from a multidisciplinary steering committee. HPP was commissioned by UCB, which initiated and is funding the project. UCB reviews all outputs, but editorial control lies with the steering committee. Contributing experts are not paid for their time.