Dermatology

The hidradenitis suppurativa (HS) Patient Partnership Summit: Empowering voices, uniting community

Andrea_Puletto — Tue, 21 May 2024 11:38:20 +0000

The hidradenitis suppurativa (HS) Patient Partnership Summit: Empowering voices, uniting community

Danuta Marchi, External Engagement, Immuno-Dermatology and Rheumatology

Andrea_Puletto Tue 21/05/2024 - 13:38

In an unprecedented demonstration of solidarity and vision, the HS Patient Partnership Summit (15-16 April 2024) marked an important milestone in the hidradenitis suppurativa (HS) community’s efforts to address this chronic and painful disease. For two inspiring days, twenty representatives from HS patient advocacy groups around the world gathered to make connections, share knowledge and co-create together.

A community united by empathy and purpose

The ��ֳ�-organized and funded Summit began with an atmosphere charged with empathy, as attendees shared their personal experiences of living with HS. Each story was a testament to the courage and determination that define the HS community. These narratives laid the groundwork for discussions that traversed the spectrum of patient care, from the challenges faced in securing an accurate diagnosis to the innovative approaches to treatment and support. We were reminded that people living with HS are not alone.

Shared knowledge to drive meaningful change

Participants shared their triumphs as well as the hurdles they’re trying to overcome in both advocacy and awareness-raising efforts within the HS community in order to learn from each other and advance their objectives. We heard how these advocates have illuminated the way forward through initiatives that empower patients and foster a deeper understanding of HS.

The importance of correct information

The critical need for correct information about HS was a resonant theme across all discussions. It was agreed that accurate information empowers patients to seek appropriate care, guides effective management and shapes the perceptions and understanding of the wider public to help overcome stigma. It’s the cornerstone upon which better health outcomes are built.

Paving the way forward

A collaborative spirit was palpable, as plans for future initiatives to increase global awareness and advance patient care took shape, marked by a commitment to collective action and patient-centered advocacy. The next steps are clear, we need to educate, gather data and, most importantly, empower patients to advocate for their care.

A pioneering spirit to address HS

The HS Patient Partnership Summit was more than an event—it was a clarion call to action and a demonstration of what can be achieved when empathy meets collaboration. As the summit concluded, participants clearly felt that this is just the beginning. The seeds of change were planted, ready to grow into a movement that promises to transform the landscape of HS care and advocacy.

Together, we look to the future with the pioneering spirit of the summit, ready to make our shared hope and vision a reality for the HS community around the world.

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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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Evolving Expectations for Dermatological Conditions

Vanco Vlastimil (��ֳ� S.A.) — Wed, 18 Oct 2023 15:28:14 +0000

Evolving Expectations for Dermatological Conditions

Camille Lee, U.S. Immunology

Vanco Vlastimi… Wed 18/10/2023 - 17:28

Upon joining the team at ��ֳ� over four years ago, I was immediately inspired by everyone’s commitment to and passion for creating differentiated solutions for people living with severe and chronic diseases. I have always found my motivation in empowering people to manage their health, so their life can be the focus, not their disease. At ��ֳ�, we consider each person’s journey to help them achieve their own goals and live their best possible life.

Part of what I’ve found makes ��ֳ� unique is the robust research, both quantitative and qualitative, that goes into understanding the patient journey and needs, and applying these insights in every stage of the clinical development and commercialization process. We talk with people living with psoriasis and listen to what they experience, which helps us appreciate the impact it can have on their physical and emotional well-being.

At the surface, psoriasis is one of the most common autoimmune disorders, affecting approximately 7.5 million people in the U.S. alone. It causes rapid build-up of extra skin cells that form thick, silvery scales and itchy, dry, red patches. But when you dig deeper, you learn that psoriasis is more than a skin disease.

We have heard that after receiving a psoriasis diagnosis, many people feel forcibly displaced from their sense of self. People living with psoriasis often report negative mental health and social well-being, and through an online survey of 500 adult patients in the U.S., more than 90% of people with a moderate-to-severe form of the condition feel their psoriasis has a significant impact on their quality of life. They begin their care journey and oftentimes feel there is no clear destination or relief. More than half of patients being treated for moderate-to-severe plaque psoriasis don’t feel that they are achieving clear or almost clear skin and, more importantly, many of these patients do not believe this to be a realistic treatment goal. People living with psoriasis deserve better.

At ��ֳ�, we refuse to accept the conventional expectations for skin clearance. We know that increased levels of skin clearance are correlated with improvements in quality of life. Because of this, we are committed to creating accessible treatments that empower people with psoriasis to expect more from their treatment.

I’m excited by our progress in delivering these solutions and look forward to seeing the impact on the dermatology community.

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Dermatology psoriasis Patients

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Dermatology

The hidradenitis suppurativa (HS) Patient Partnership Summit: Empowering voices, uniting community

A community united by empathy and purpose

Shared knowledge to drive meaningful change

The importance of correct information

Paving the way forward

A pioneering spirit to address HS

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

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Evolving Expectations for Dermatological Conditions

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Dermatology

The hidradenitis suppurativa (HS) Patient Partnership Summit: Empowering voices, uniting community

A community united by empathy and purpose

Shared knowledge to drive meaningful change

The importance of correct information

Paving the way forward

A pioneering spirit to address HS

Leave a Comment

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

Leave a Comment

Evolving Expectations for Dermatological Conditions

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