Hidradenitis suppurativa (HS) is a chronic, relapsing and often debilitating skin disease.
It typically presents as painful, fluid-filled lesions that most commonly affect the armpits, groin, genitals, thighs and backside areas of the body, but can occur wherever there is skin. There currently is no cure for HS and a combination of medication, surgery and lifestyle modifications are required to manage the condition.
HS while not “rare” remains classified as an orphan or rare disease to this day in some countries worldwide, specifically the United States. The 0.08%–4% prevalence of patient population does not support most definitions for rare or orphan diseases. But, the unmet needs for patients everywhere results in an orphan disease unique reality. This is a tragic phenomenon in healthcare for a minimum of approximately 70,000,000 world wide if going by just the minimum 1% prevalence.
Addressing the unmet needs of patients through access to educational publishing for awareness, coordination of care, precision medicine, digital health and medicine is the sole focus of our growing organization.
Our programs and projects seek to improve the quality of life for patients.
About Our Organization
We are a unique collective of like-minded Hidradenitis Suppurativa (HS) patients who support the legitimate efforts of all HS organizations worldwide. We are inherently passionate advocates for awareness and patient support focused on addressing our unmet needs through our programs and projects.
Our programs and projects seek to improve the quality of life for patients through awareness and education. Publishing both online and in print is a core focus. Our efforts include political and legislative activism, patient storytelling for awareness, creative videography, documentary film work, live webinars, big data research, and patient conferences. Continually new efforts are being planned for and executed.
Our Mission and Purpose
We are patient activists and self-advocates waging a war of ideas daily to end HOPELESSNESS and SUFFERING for millions through education and technology, as no one has ever done before. We will do everything within our power to aid and bolster awareness, understanding, philanthropy, research as well as compassion for those plagued by chronic disease – specifically HS as we are.
“This misinformation and awareness pandemic, these challenges are the core problem around HS misdiagnosis and the lack of research, treatments, or a cure historically. Nothing else will ever be resolved without first fighting for awareness through access to education – AWARENESS should be our only purpose until these problems are resolved. Once realized, research will flourish and the unmet needs of patients, as a result, will be met.”~Ron Bercume
Our aggressive awareness publishing efforts were started by Graphic Designer and HS patient of 20 years, Ron Bercume.