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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, German, Italian, Japanese, Spanish and Swedish.

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

International report

International report

Call to action: improving the lives of people with hidradenitis suppurativa (HS)
Country reports

Country reports

Call to action: improving the lives of people with hidradenitis suppurativa (HS) in the United Kingdom
Infographic

Infographic

What is HS and how does it affect the people who live with it?
Webinar recording

Webinar recording

Act on HS: tackling the unmet needs of people with hidradenitis suppurativa

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.

We also produced national reports exploring HS in ten countries, which will be published throughout 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 Lewis, Hidradenitis and Me, 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.

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