Hidradenitis Suppurativa (HS) Awareness Programs

Hidradenitis Suppurativa (HS) Awareness Programs

We are a unique collective of like-minded chronic disease patients who support the legitimate efforts of all Hidradenitis Suppurativa organizations worldwide. Patients ourselves, we are inherently passionate advocates for patient support and chronic orphan or rare disease awareness. 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 understanding, philanthropy, research as well as compassion for those plagued by chronic disease – specifically Hidradenitis suppurativa (HS) as we are.

Our aggressive awareness efforts were kick started by Graphic Designer and HS patient of 20 years, Ron Bercume.



the Science & Research | The largest online Hidradenitis Suppurativa Resource for education, patient support and awareness worldwide

We are building and tracking all current and historical medical information, clinical studies, and research data for awareness that has ever been published and is available to the public. This archive is growing, and is available for all patients to maintain knowledge of the the most generally accepted information available. Creating open dialogue for awareness is essential to explain the disease to family, friends, employers, and medical personnel. Knowing how to describe your illness is essential when a dangerous lack of awareness exists globally for all patients.

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the PETITION | Patients call on the USA Rare Disease Congressional Caucus for renewed leadership

Patients worldwide call on the United States to take the lead in support of the Rare Disease Congressional Caucus to engage and follow through on a new effort to realize Hidradenitis Suppurativa (HS) awareness with a patient-focused ethic. Measurable progress has started to gain momentum within research, treatment, education, and awareness. While we as patients continue to fight for support, acceptance, and understanding, there has never been more of a need for recognition and support by our leaders than today.

PETITION DETAILS

the Film | “The End of Hopelessness”, a Creative Awareness Documentary Series

This Hidradenitis Suppurativa Awareness Documentary features a 17-year-old German patient, who among others, Bercume was blessed to interview and spend time with while in Germany.  This first flagship independent release in a series of documentary videographic creative works is to bring light to the issues of awareness, education, and lack of treatment for HS patients globally. The distinctions and differences between the USA and Germany that exist are explored.  The hard-hitting reality of global awareness issues and education can be seen and measured in the terms of HOPE for patients can be experienced through Bercume’s short documentary films.

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the Interviews | LIVE WEBINARS and INTERVIEWS

Hiding and isolation among Hidradenitis Suppurativa patients is a pandemic.  Recent studies report that the average HS patient hides for an average of 8 to 12 years before being diagnosed for a number of reasons. It is the core problem that prevents open communication and progress for patients and research in general. Nothing else will ever be resolved without first fighting for awareness and education.  Patients can participate in a monthly hour long LIVE broadcast to tell their stories and to review our current progress and state of affairs as a growing organization.  These webinars will occur more frequently moving forward featuring other members of the community being interviewed.

WATCH THE LATEST INTERVIEW

Hidradenitis Suppurativa Patient Outreach for Awareness, Reach Out and Touch Somebody!

Use our letter or create your own, just talk about it to anyone and everyone! “May I ask for 20 minutes of your time to learn about a debilitating hereditary disease that I was born with and have been suffering with for decades? It has ruined my life and many millions of others for centuries. The Health Care system, due to the Orphan status of this disease, suffers itself from a pandemic of misinformation and dangerous lack of awareness. People are dying. Please Help?”

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The Hidradenitis Suppurativa Patient Self-Advocacy Initiative

We are patients who not only suffer with Hidradenitis Suppurativa/Acne Inversa but also pride ourselves on being there for patients as they first learn of why they are different from everyone else – often in ignorance as to why, and in self-induced isolation. They need to know there is help and hope. We are dedicated to each and every one of you, and we leverage the latest in technology to assure accessibility and communication for all of us who are geographically isolated. It is time we step up as Leaders, Advocates, Organizers and Activists: Those who are interested in helping others that cannot help themselves or have no voice. Are you interested in saving lives by providing patient support, resources and access to reliable information? Our organization is in need of the following human resources – By Patients, for Patients.

HSADVOCACY

Hidradenitis Suppurativa Global Support Groups Online

The first and only dedicated Hidradenitis Suppurativa (Acne Inversa) community-driven social platform of its kind. Developed with Patient Support, Education and Awareness centric. HSsupport.org delivers member-only systems including: Social Patient Profiles, Friend Connections, Activity Streams, both public and private User Groups, Private Messaging and Chat, Community-Driven WIKI and Forum, Awareness Project Management System, Interactive Events Calendar, Educational Modules for Coursework and Testing, and much more. Ready with compassionate hearts to listen, understanding, help, and offering guidance with a growing staff of  experienced and veteran HS Advocates. Not only for Patients but for Family and Friends.

HSSUPPORT

 

HSAWARENESS.ORG | Fighting for Hidradenitis suppurativa (HS), a.k.a Acne Inversa Patient and Doctor Awareness ©2017 hidradenitissuppurativaawareness.org  All Rights Reserved. Your use of this website constitutes explicit agreement to our Terms of Use and Privacy Policies. This website does not provide medical advice, diagnosis or treatment.

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