Hidradenitis Suppurativa Foundation is a non-profit organization improving the lives of people affected by HS through advocacy, education and research.
Symptoms
You might call them boils, spots, or cysts, but those painful lesions that rupture and refill, found in places like underarms and groin and leaving behind scars, are called Hidradenitis Suppurativa. The look and feel of HS can change over time and be a little different for each person.
Causes
Dedicated researchers are hard at work determining what causes HS, but multiple factors such as a malfunctioning immune system, an imbalance of normal skin bacteria, hormonal fluctuations, genetic predisposition and lifestyle are thought to contribute.
Treatments
HS treatments aren’t one-size-fits-all, and that’s a good thing. With the help of a dedicated dermatologist, each of the factors that affect HS can be addressed alone or in combination to help you get relief.
Impact
Hidradenitis Suppurativa may first appear to be a cosmetic issue to the uninformed, but HS is painful and burdensome from the first stage to the most severe. HS was once thought to be rare, but it is now understood that between 1-2% of the population is living with HS.
Get the facts about Hidradenitis Suppurativa (HS).
What is Hidradenitis Suppurativa?
HS is a chronic inflammatory skin condition that causes painful lumps that are often found in particular areas of the body, such as the underarms or in the groin and inner thigh, but can also happen on the chest, back, or butt. It is often mistaken for infected follicles, abscesses, boils, or cysts.
HS is more common than you think, just under diagnosed until now. The HS Foundation is committed to encouraging, supporting and celebrating people living with HS, while leading efforts for advocacy, education, and research.
Our Mission and History
People living with Hidradenitis Suppurativa are at the heart of our mission.
Education
Our programs directed toward both patients and medical professionals are capped by an annual international conference, the Symposium on Hidradenitis Suppurativa Advances, where the latest breakthroughs in the cause, diagnosis, control, and cure of Hidradenitis Suppurativa are shared in a three-day educational conference. Educational resources on our website include the latest treatment guidelines, online courses addressing the unmet needs of patients, and the research changing the landscape in Hidradenitis Suppurativa.
- Annual Symposium on Hidradenitis Suppurativa Advances (SHSA) for researchers interested and involved with HS
- HS Spotlight - a virtual education platform for people with HS
- HS Academy for dermatology residents interested in providing the best care for people with HS
- HS In-Depth for advanced practive providers interested in providing the best care for people with HS
Research
Hidradenitis Suppurativa is one of the most devastating diseases in all of dermatology. Research into the cause, control, and eventual cure of HS is central to our mission. We fund basic, translational, and treatment-based research through multiple funding programs, while guiding and promoting research from relevant stakeholders.
- HSF Danby Research Grants
- HSF Translational Research Grants
Advocacy
Our advocacy goals strive toward more and better treatment options, easier access to care and better coverage from insurance, and patient-centered outcomes in research and drug development. The HS Foundation actively advocates for people with HS as a member of the Coalition of Skin Diseases (CSD), a coalition that includes over 30 organizations representing over 80 million Americans with dermatological conditions.
- Advocate for patients with payers and policy makers
- Investigate patient-reported endpoints in clinical trials
History
Since our founding in 2005, the Hidradenitis Suppurativa Foundation has fostered and encouraged worldwide research by developing and supporting an interdisciplinary family of scientists and physicians devoted to studying Hidradenitis Suppurativa, in order to deliver more effective forms of treatment and preventative measures to those with this common, debilitating, and eminently chronic disease.
- In October 2012, it was determined that a European organization representing HS goals was needed. Led by Drs. Christos Zouboulis and Gregor Jemec, the European Hidradenitis Suppurativa Foundation was formed.
- In April 2013, the HSF’s new President, Dr. Paul Hazen, welcomed multiple new members to its Board of Directors, representing experts in clinical care and research from throughout the United States. The Board was joined and supported in this mission by its first pharmaceutical Partner, AbbVie.
- In May, 2014, Dr. Danby assumed the presidency and colleagues in Canada were approached, forming the Canadian HS Foundation was formed.
- In March, 2016, Dr. Iltefat Hamzavi assumed the Presidency, overseeing a period of renewed HS interest including the HS Foundation’s first Symposium on Hidradenitis Suppurativa Advances and establishing the HSF Danby Research Grant program.
- In March, 2022, Dr. Joslyn Kirby became the new president, expanding educational programs and funding for research, fueled by increased funding from partners interested in new therapies for HS.
Attendees at SHSA meetings.
Growth in HS clinical trials in the past 5 years
Educational talks given by HSF members in the past year.
HSF-endorsed specialty clinics