HSAWARENESS NonProfit 501c3
First of all, allow me to share a short definition of what Hidradenitis Suppurativa (HS) is and why we fight so hard to raise awareness for this Orphan Disease that touches hundreds of millions world wide. The following section is quoted directly from our flagship website's mission and purpose here: HSAWARENESS.ORG .
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.
To be the latest registered HS Non-Profit (501c3) operating out the USA Internationally
This GFM campaign is directly to fundraise for the Non-Profit (501c3) registration. We cannot realize this next and essential step for our critical work without you. We share this information and context in detail for the continued and as always sake of transparency with the public, our extended family and supporters.
Legalzoom will be used for the first year. Mainly due to the low cost being much more manageable than using a local lawyer and accountant.
There are several tiers of service, but we would like to go with the comprehensive package for registration that will be expedited and cover everything for many reasons. If we cannot raise this full budget as a goal, into August or September this campaign will be closed and we will go with what was raised and what we can afford together.
With this budget realized, this will take us out of this NGO "Start-Up" phase which has been now two years strong while building our #HSAWARENESS efforts, a robust publishing enterprise for patient and physician education and support, and our massive dedicated web platforms.
It is now time we transition to a 501c3 Non-Profit charity with your help.
A NGO is defined as "A non-governmental organization (NGO) is a not-for-profit organization that is independent from states and international governmental organizations. They are usually funded by donations but some avoid formal funding altogether and are run primarily by volunteers." ~Wikipedia
These registration fees are the ONLY thing holding us back from being the latest registered HS Non-Profit 501c3 operating out the USA Internationally, out of our State of Pennsylvania where Fawn and I reside.
We share this information now to ask for everyone's valued advice and to keep the conversation wide open as we do and have with everything we have always done.
As we move forward we will always share and publish publically, including all financials, for everything we do. Well beyond what is required by laws and legislation and for which no organization for many reasons do not.
This is a philosophy we will not compromise ever within our work for HS.
We feel very strongly in regard that all HS patients have ownership of our work, efforts, and purpose.
Below is the link for the LegalZoom tiers of service, the costs associated. Last year I did start the process and paid around $400 on the last credit card balance I had available. Available after my own health crisis resulting in unemployment and bankruptcy due to disability for many reasons beyond just #HidradenitisSuppurativa (HS).
This first process started I could not continue to pay for and was terminated - we have to start fresh, which is not necessarily a bad thing.
For your review and assistance, the 501c3 Non-Profit Registration costs being fundraised for within this campaign can be found here:
https://www.legalzoom.com/business/business-formation/nonprofit-pricing.html
There are other costs for the first year to retain an accountant and lawyer that we have approximately another 1,000 dollars budgeted for.
Is there anything you can help with? Advice, support, guidance, and just listening is so much very appreciated and needed.
It is a critical time for us currently. We cannot continue with this work without your support moving forward into the future.
Ronald James Bercume Jr.
Organization Founder and Healthcare Civil Rights Activist
HSAWARENESS.ORG & HSSUPPORT.ORG
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WHAT IS THE HSAWARENESS.ORG NETWORK?
Innovating within Healthcare IT for Hidradenitis Suppurativa Patients Awareness and Support
Developing dedicated HS web properties using the latest in Information and Mobile-First Technologies. To realize unmet needs and access to educational publishing, coordination of care, precision medicine, digital health and medicine for patients worldwide.
Every project for HS patients that we produce is rooted in the following core philosophies to support our organization’s mission and purpose.
- Engineered to be privacy-centric with users in full control.
- Engineered to be democratic and patient-centric without compromise.
- Engineered to be awareness and education centric for all patients, physicians, family, and friends.
- Engineered for patients to become more engaged in their own care.
- Engineered to close communication gaps for isolated patients.
- Engineered to help aid in decision-making by patients and their Healthcare providers.
Purpose and Mission:
http://hidradenitissuppurativaawareness.org/created-by-hidradenitis-suppurativa-patients-for-patients/
Call for Awareness:
http://hidradenitissuppurativaawareness.org/hidradenitis-suppurativa-hs-call-for-awareness-letter/
Innovating within Healthcare IT for HS Patients:
http://hidradenitissuppurativaawareness.org/hidradenitis-suppurativa-hs-awareness-programs/
Learn more at HSAWARENESS.ORG
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More information about our work and efforts over these past 2 years:
HSAWARENESS.ORG
The largest online Hidradenitis Suppurativa Resource for education, patient support, and awareness worldwide
We are building and tracking all current and historical medical information, current affairs, clinical studies, and research data for awareness that has ever been published and available to the public in one place. This archive is growing and is available for all patients to maintain knowledge of the most generally accepted information available. 
HSSUPPORT.ORG
Hidradenitis Suppurativa Global Support Groups Online
The first and only dedicated Hidradenitis Suppurativa community-driven social platform of its kind. Developed with patient support, education, and awareness at its core. Not only for Patients but for Family and Friends.
The CNN Health Interviews 2016:
Last year we had an opportunity to be interview by Healthgrades. Our Organization founders have been published to CNN Health.
Ron - Hidradenitis suppurativa (HS): I will not hide
Fawn - Hidradenitis Suppurativa: Getting a Diagnosis
Emanuel - My Hidradenitis Suppurativa Diagnosis: Finally, Some Answers 
Hidradenitis Suppurativa “#iwillnotHIDE” Patient Personal Stories:
Everyone has the opportunity to publish their story within the Organization. Although we all share the same orphan disease, each story can be different and unique. Obtaining knowledge of how others cope with HS can be useful - the mental health implications for all patients is also a debilitating aspect of this potentially life long chronic disease. By design and to make sure there is NO BARRIER to #HSAWARENESS for patients new to this disease and old, ALL stories are published online first at HSSUPPORT.ORG. Click Here
Available on AMAZON in print. Our self-publishing book program with patient contributions is available in libraries, schools, book stores, online vendors and homes. The series and collection of patient stories will foster general awareness for HS and sales will directly benefit awareness programs such as these.
Volume 1: http://amzn.to/2i4f2VC
Volume 2: http://amzn.to/2iodaoD
Patient Films, Creative Videography, and Live Webinars:
Hiding and isolation among HS patients is a pandemic. Recent studies report there is a delay of 8 years between onset of symptoms and HS diagnosis. Delayed diagnosis is a core problem that prevents open communication and progress for patients and healthcare professionals. A collection of ongoing creative short films shared and published by HSAWARENESS.ORG feature HS patients worldwide. In an effort to bring education, awareness, and support to everyone whose lives have been impacted by Hidradenitis suppurativa are published to Youtube. Click Here
