HS

Closing gaps in HS care through community engagement and scientific innovation

Borysiuk Viktor (External) — Wed, 20 Nov 2024 10:25:57 +0000

Closing gaps in HS care through community engagement and scientific innovation

Rhonda Peebles, Dermatology US

Borysiuk Vikto… Wed 20/11/2024 - 11:25

This past summer, ��ֳ� welcomed members of the hidradenitis suppurativa (HS) community – dozens of people living with HS, caregivers, advocacy groups, and medical experts – onto our Atlanta campus for our HS Summit to advance understanding of the treatment journey and unmet needs of those impacted by this disease.

It was incredibly powerful to hear patient testimony firsthand throughout the weekend. I was struck by the openness and honesty of the community as they shared their physical and emotional struggles and the importance of speaking up. Engaging with the HS community and witnessing their strength and perseverance is one of the most rewarding and inspiring parts of my job at ��ֳ�.

Hearing insights and experiences from the HS community have encouraged our drive to bring a new treatment option to people living with this painful, chronic inflammatory skin condition. Today, I’m excited and proud that dermatologists have more options than ever to effectively manage HS.

Our efforts to support both patients and clinicians are ongoing and go far beyond treatment. One big initiative is supporting a registry of HS patients in partnership with the University of California San Francisco (UCSF), which will facilitate research of this disease through collaboration between investigators, clinicians, patients, and industry to improve the lives of people living with HS. We are also proud to sponsor the HS Papaya app, which was developed by two leading HS physicians to help people living with HS track their symptoms and communicate those to their provider, connect with an HS center of excellence, and more. And at the recent Symposium on Hidradenitis Suppurativa Advances (SHSA) conference, we shared new HS data and met with key third party medical and patient advocacy organizations to advance our collaborative initiatives. These are just a few of the things we’re doing as we aim to establish leadership in HS and dermatology.

As advocacy leader Brindley Brooks, co-founder and president of HS Connect, said at the HS Summit, “There’s never a good time to have HS, but there’s never been a better time to have HS.” I am inspired each day as I work alongside those with such a dedication to improving the lives of people impacted by HS. It is a hopeful time. As we forge forward, I know that there will continue to be more treatment options, awareness, and support resources for HS patients – and I am honored to be part of this new era for HS care.

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Hidradenitis suppurativa: raising awareness, championing advocacy and advancing care

Vandenbruaene Nathalie — Thu, 30 May 2024 07:53:43 +0000

Hidradenitis suppurativa: raising awareness, championing advocacy and advancing care

Eimear O'Brien, Global Communications & Company Reputation

Vandenbruaene … Thu 30/05/2024 - 09:53

Imagine, for a moment, a health condition that remains largely unknown yet profoundly affects the lives of approximately one percent of the population in most studied countries. - Hidradenitis suppurativa (HS), though seldom making headlines, is an inescapable reality for those living with this painful, chronic, recurring, and potentially debilitating skin disease.

HS is believed to arise from a complex interplay of genetics, lifestyle and inflammatory responses, perpetuating a relentless cycle of inflammation. It often manifests as painful nodules, abscesses, draining dermal tunnels and scarring. These symptoms can lead to physical limitations that can, in turn, diminish quality of life and impact relationships and career, among other things.

Despite recent progress, there remains a high level of unmet needs within the community. Challenges include low levels of awareness, lengthy diagnosis delays and often restricted access to specialist care.

June 3rd to 7th marks HS Awareness Week 2024, an annual event dedicated to raising awareness and deepening understanding of this disease. At ��ֳ�, we embrace this opportunity to unite with the HS community this week to raise awareness, dispel misconceptions and champion advocacy.

Raising awareness
��ֳ�’s ambition is to transform the lives of people living with severe disease. The road to transformation starts with awareness, knowledge and understanding. As part of this, ��ֳ� is implementing HS awareness initiatives with healthcare professionals and patients around the world. For HS Awareness Week 2024, we are also pleased to present a succinct compilation of facts about this often-overlooked skin disease. Discover more below.

Championing advocacy
In the United States, ��ֳ� supports the HS Coalition, which aims to transform the HS landscape by promoting policies that can improve the lives of individuals with HS. The HS Coalition seeks to bring together the best minds and ideas to drive awareness, address disparities and improve outcomes for all impacted by HS.

Additionally, ��ֳ� commissioned and funded an initiative on HS with The Health Policy Partnership. This initiative 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. The Health Policy Partnership has published an international report, titled Call to action: improving the lives of people with hidradenitis suppurativa, developed based on a comprehensive literature review and interviews with both people living with HS and healthcare professionals.

To co-create solutions and advance understanding of the disease, we also collaborate with HS patient organizations. In addition, our partnership with myHealthTeam has helped to support a vibrant social network for those living with HS, which helps to foster connections within the community.

Advancing care
At ��ֳ�, we are committed to raising the standard of care for HS. HIDRACENSUS 7.3 is an expert-led, insight-based program in Europe that is sponsored by ��ֳ�. This pioneering multi-stakeholder program is led by a steering committee and aims to support educational needs, with the overarching goal of improving outcomes for people living with HS. The program engages with all stakeholders involved in the care of people living with HS, to be a truly holistic and informed initiative.

In addition, ��ֳ� and Stanford Medicine have established a multi-year collaboration aimed at transforming the lives of people living with HS. This collaboration fuses expertise with clinical insights, real-world, omics and other data sets, and advanced technologies, to deliver better patient outcomes.

This HS Awareness Week and every week ��ֳ� is proud to unite with the global HS community to raise awareness and foster understanding of this disease. Awareness weeks such as these are a powerful reminder of the challenges faced by people living with HS. Together, let’s make a positive difference and create a brighter future for everyone.

Click on the picture to open the infographic

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Hidradenitis Suppurativa HS HS Awareness Week 2024 HIDRACENSUS 7.3

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Advocating for Change in the Lives of People with Hidradenitis Suppurativa

Vandenbruaene Nathalie — Fri, 12 Apr 2024 08:00:37 +0000

Advocating for Change in the Lives of People with Hidradenitis Suppurativa

Danuta Marchi, External Engagement, Immuno-Dermatology and Rheumatology

Vandenbruaene … Fri 12/04/2024 - 10:00

At ��ֳ�, we are committed to improving the lives of people living with hidradenitis suppurativa (HS), a chronic, painful, inflammatory skin condition that can have a significant and detrimental impact on patients’ lives.

Today, there are several barriers for people living with HS, which can impede their ability to live life to the fullest potential. These include insufficient awareness of HS and delays in diagnosis. These factors can impact the timely and appropriate care that people with HS receive. Additionally, the stigma associated with the disease can negatively affect mental wellbeing and interpersonal relationships.1 Addressing these barriers is a crucial step towards improving lives.

A new international report, Call to action: improving the lives of people with hidradenitis suppurativa (HS), published by The Health Policy Partnership (HPP), communicates the condition’s significant impact and advocates for change by highlighting policy and system barriers to better HS care. The report, published in February 2024, was led by HPP with guidance from a multi-disciplinary Steering Committee. It was developed based on literature review as well as some interviews with people living with HS and healthcare professionals. The research focused largely on ten countries - Canada, Denmark, France, Germany, Italy, Japan, the Netherlands, Spain, Sweden and the United Kingdom. The insights from people living with HS contained in the report serves as a powerful call to action for a deeper understanding of the impact of this debilitating disease on patients’ lives.

The report highlights ten priority recommendations including raising awareness of HS among the general public, employers and healthcare professionals. The focus on increased awareness with these audiences aims to mitigate stigma, encourage people to seek care, accommodate the needs of employees living with HS and improve referral rates and the speed of diagnosis. You can read the full list of recommendations in the online report here.

At ��ֳ�, we firmly believe that implementing these recommendations will significantly enhance the lives of people with HS. By collaborating with the community to enact these changes, we can collectively help to ensure that people living with HS receive the necessary care and support they need today and into the future.

This report was developed as part of a project which is led by The Health Policy Partnership with guidance from a multidisciplinary Steering Committee. HPP was commissioned by ��ֳ�, which initiated and funded the project.

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Hidradenitis Suppurativa HS dermatology Immunology

Comment:

Posted by Takieyah Mathis, 17 April 2024

Thank you for bringing a spotlight to this condition!

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��ֳ� go ‘Under the Skin’ with new hidradenitis suppurativa (HS) podcast

Vanco Vlastimil (��ֳ� S.A.) — Tue, 07 Nov 2023 08:00:00 +0000

��ֳ� go ‘Under the Skin’ with new hidradenitis suppurativa (HS) podcast

Chiara Danelli, HS Dermatology

Vanco Vlastimi… Tue 07/11/2023 - 09:00

As part of ��ֳ�’s commitment to raising the standard of care for patients suffering with hidradenitis suppurativa (HS), ‘Under the Skin’, ��ֳ�’s latest podcast series, draws back the curtain on this debilitating, chronic inflammatory skin disease. Aimed at healthcare professionals looking to learn more about HS, this podcast aims to shed light on this under-recognised disease, following the often complex patient journey from pre-diagnosis through to disease management. Hosted by Dr Barry McGrath (HS patient advocate and co-founder of HS Ireland) each episode in this five-part series invites a new expert guest to share their knowledge of treating HS and to discuss one of the many facets of the patient experience.

All currently available episodes are listed below, and you can subscribe to the series on Spotify to catch all episodes as they’re released.

Listen to our first episode, “What is the bigger picture in HS?” on Spotify now (for healthcare professionals only).

Episode 1 welcomes Dr John Ingram (Consultant Dermatologist at Cardiff University) in conversation with our host Dr Barry McGrath (co-founder of HS Ireland) to share an overview of HS, its presentation in patients, epidemiology and global prevalence.

Episode chapters:
Introducing Dr John Ingram
Background and pathobiology of HS
HS patient demographics
HS global and EU epidemiology
HS among other diseases

Stay up to date with the latest ��ֳ� news on our social media channels: LinkedIn and X (Twitter).

Speaker disclosure:

Barry McGrath, PhD, has received consultancy/advisory board disease related honoraria from Novartis and ��ֳ�.

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Under the Skin HS Hidradenitis Suppurativa Chronic inflammatory diseases Dermatology

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��ֳ� at the 1st International Societies for Investigative Dermatology (ISID) Meeting

Vandenbruaene Nathalie — Wed, 10 May 2023 06:40:23 +0000

��ֳ� at the 1st International Societies for Investigative Dermatology (ISID) Meeting

Eimear O'Brien, Global Communications & Company Reputation

Vandenbruaene … Wed 10/05/2023 - 08:40

The Inaugural Meeting of the International Societies for Investigative Dermatology (ISID) is taking place this week in Tokyo, Japan, 10-13^th May 2023. ISID is an organization focused on the advancement of investigative dermatology and cutaneous biology. As a Company committed to advancing patient care in chronic dermatological conditions such as psoriasis and hidradenitis suppurativa (HS), ��ֳ� is proud to participate in this international meeting.

ISID 2023 offers an exciting four-day program of outstanding cutting-edge data and science. We look forward to joining the dermatology community over the next few days to discuss the latest research. Healthcare professionals attending ISID 2023 will have the opportunity to join two ��ֳ� symposia focused on HS and psoriasis:

Understanding Hidradenitis Suppurativa: an educational symposium, Thursday, May 11^th, 12:05 - 13:05 JST
Spotlight on Psoriasis: new perspectives on therapy and pathology, Saturday, May 13^th, 12:05-13:05 JST.

In addition, ��ֳ� is proud and honoured to have two scientific abstracts accepted for presentation at this inaugural meeting, with one focused on hidradenitis suppurativa accepted as an oral presentation, and one on psoriasis accepted as a poster presentation.

At ��ֳ�, we understand that significant unmet needs remain in HS and psoriasis. We are committed to collaboration with the community to help advance science aimed at elevating standards of care. Meetings such as ISID 2023 provide a welcome forum to engage, connect and accelerate progress aligned to our common purpose.

If you are a healthcare professional attending #ISID2023, we look forward to meeting with you in Tokyo.

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ISIS Hidradenitis Suppurativa HS dermatology International Societies for Investigative Dermatology

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Supporting Hidradenitis Suppurativa (HS) Awareness Week

Vandenbruaene Nathalie — Tue, 07 Jun 2022 09:13:05 +0000

Supporting Hidradenitis Suppurativa (HS) Awareness Week

Ingrid Pansar, Medical Affairs

Vandenbruaene … Tue 07/06/2022 - 11:13

This week (6^th – 12^th June) is Hidradenitis Suppurativa (HS) Awareness Week, when we show our support for people around the world living with this debilitating and painful chronic skin condition. HS is an immunological skin disease characterised by deep inflammatory nodules and recurring abscesses in sensitive areas of the body, which can cause considerable psychological distress, and impact on all areas of life, including interpersonal relationships, education and work. Delayed diagnosis is common, which means longer without appropriate treatment, the consequences of which can be severe in terms of disease progression.

HS Awareness Week, is held in the first full week of June every year, with the aim of raising awareness of HS and highlighting the challenges that people living with HS face. With our longstanding heritage in immunological conditions, and our focus on innovation with patients at the centre, we are well positioned to support this aim.

Our commitment to people living with severe diseases is highlighted through our ongoing partnership with MyHealthTeam, a company that builds social networks for people living with chronic conditions. In HS, we are delighted to partner with MyHealthTeam on ‘myHSteam’, a social network for people living with HS.

Because of the nature of their symptoms, people living with HS can often feel socially isolated and alone. ‘myHSteam’ connects people living with HS, offering a supportive space where they can share their stories, thoughts and questions with a welcoming community of people who are going through a similar experience. ‘myHSteam’ also offers a wealth of medically reviewed and educational articles on all aspects of living with HS in its resource center, which has recently been updated with the latest information on HS for its members.

“Our partnership with ��ֳ� on myHSteam has been invaluable to the people on our network living with HS. We are increasing the number of members every day, leading to more shared experiences, more support, and most importantly providing our members with an accepting, strong global community. We are facilitating relationships based on mutual understanding between people who are ready to support each other,” Beth Luce, SVP Partnerships and Partner Operations at MyHealthTeam.

Here at ��ֳ�, through our scientific innovations and partnerships, we are committed to closing the gaps in knowledge and care surrounding HS, to ultimately improve the lives of people living with HS. Raising awareness of the condition and its impact is an important first step on our journey.

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Hidradenitis Suppurativa HS immunological skin disease MyHealthTeams myHSteam

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HS

Closing gaps in HS care through community engagement and scientific innovation

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Hidradenitis suppurativa: raising awareness, championing advocacy and advancing care

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Advocating for Change in the Lives of People with Hidradenitis Suppurativa

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��ֳ� go ‘Under the Skin’ with new hidradenitis suppurativa (HS) podcast

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��ֳ� at the 1st International Societies for Investigative Dermatology (ISID) Meeting

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Supporting Hidradenitis Suppurativa (HS) Awareness Week

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HS

Closing gaps in HS care through community engagement and scientific innovation

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Hidradenitis suppurativa: raising awareness, championing advocacy and advancing care

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Advocating for Change in the Lives of People with Hidradenitis Suppurativa

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������ֳ� go ‘Under the Skin’ with new hidradenitis suppurativa (HS) podcast

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������ֳ� at the 1st International Societies for Investigative Dermatology (ISID) Meeting

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Supporting Hidradenitis Suppurativa (HS) Awareness Week

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��ֳ� go ‘Under the Skin’ with new hidradenitis suppurativa (HS) podcast

��ֳ� at the 1st International Societies for Investigative Dermatology (ISID) Meeting