Seeking To Improve The Quality Of Life For HS Patients
Hidradenitis suppurativa (HS) is a chronic, relapsing and often debilitating inflammatory Skin Disease.
HS 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.
While not “rare” as it was once thought to be, the chronic inflammatory skin disease sometimes remains classified as an orphan or rare disease to this day in some countries worldwide, specifically the United States. The estimated 0.08%–4% prevalence, or the total number of patients within a population does not often support most numerical definitions for a rare or orphan disease, but the unmet needs for HS patients everywhere result in a similar tragic circumstance that needs to be addressed.
This phenomenon in healthcare for a minimum of 70,000,000 human beings worldwide needs to change.
Addressing the unmet needs of HS patients is the singular purpose of our growing organization. Our programs and projects seek to improve the quality of life for patients worldwide. Helping to bolster public awareness through educational publishing across the Internet, Print, and Social Media is what we excel at.
Advocating for proper patient care and treatment in Healthcare is an important concern of ours as an organization as well. Our activism efforts are rooted in calling attention to the fragmented Healthcare circumstance that most HS patients are challenged with. In addition, within a self-advocacy and patient support construct, helping patients find access to much-needed Precision medicine (PM), Evidence-based medicine (EBM), proper Coordination of Care, and Digital Health are also areas where we seek to help.
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.