Our work includes political and legislative activism, patient storytelling, creative videography and documentary film work, live patient webinars for awareness and education, big data research initiatives for patient quality of life awareness, patient conferences and many more projects and programs continually being planned for and executed.
Programs and Projects for Patient Support and Awareness
The Largest Online Hidradenitis suppurativa (HS) Resource Worldwide
A comprehensive curation of HS publishing activity is now in one place for the first time ever. A growing inventory of current and historical clinical Research Science, Politics, Legislation, Court Case Records, Important Individuals, Organizations, Social Media Activity and Patient Resources are now connecting everyone forever. This archive is growing and is available for all patients and physicians.
Hidradenitis suppurativa (HS) Patient Online Support Groups
The first and only dedicated Hidradenitis Suppurativa (HS) Online Support Group Community of it’s kind. Developed with Patient Support, Education and Awareness centric to its existence. Built by patients, for patients to be afforded a resource that many of us so desperately need and deserve.
Patient Personal Storytelling For Awareness and Support
Obtaining knowledge of how others handle their pain can be useful – the mental health implications for all patients can be the most debilitating aspects of this disease. Our self-publishing book program with patient contributions is available in libraries, schools, bookstores, online vendors, and homes. Published both online and in print for patient and physician awareness.
Hidradenitis Suppurativa (HS) International Awareness Private Facebook Support Group
This is a private group for patient support, research, science, and proactive efforts to make patient lives better. A closed Facebook Group as a compliment to our public Facebook public pages and our larger website platforms. A place to share other groups and projects with others in mutual love and support.
Videography And Documentary Filmmaking
A growing collection of creative videography works published by HSAWARENESS.ORG. Recent studies report there is a delay of 8-10 years between onset of symptoms and diagnosis. Delayed diagnosis is a core problem that prevents open communication and a proper standard of treatment for HS patients. In an effort to bring education, awareness, and support to everyone whose lives have been impacted by Hidradenitis suppurativa.
Known Dermatologists And Physicians That Treat Hidradenitis suppurativa (HS) patients
Patients review and report on their care, both successful and unsuccessful experiences for current and future generations to leverage as a much-needed tool and resource for effective care. Recognition of HS by qualified medical professionals will create substantial awareness and make it possible for patients to be treated properly with Evidence-Based Medicine at the inception of the disease.
A Quarterly Magazine Published By Hidradenitis suppurativa (HS) Patients
The bulk of each issue quarterly will be a high-level digest and/or summary of the hard work of our growing organization. To feature what we aggressively publish on daily for #HSAWARENESS and #HSSUPPORT: our patient interviews in the spirit of journalism, our documentary creative film work, global affairs and news, updates on our special programs and projects, and of course educational features as we track what is current and evolving in science and research globally.
Hidradenitis suppurativa (HS) Awareness On The Radio
We can actively and long-term take on a new effort to acquire participation and support for our awareness efforts from radion stations. By pursuing donated low-demand airtime to run 10, 30, or 60-second spots on radio stations around the world this special program has potential to create real and lasting change.