Innovating within Healthcare IT for Hidradenitis Suppurativa Patients
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.
Programs Currently Available For HS Patients
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 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 lack of awareness exists globally for all HS patients.
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 it’s core. Delivering member-only systems including: social patient profiles, a patient article editor for awareness publishing, friend connections, community activity streams, both public and private user groups, private messaging, community chat and much more. Ready with compassionate hearts to listen, understand, help, and to offer guidance with a growing team of experienced and veteran HS Advocates. Not only for Patients but for Family and Friends.
Programs Being Developed For HS Patients
The Hidradenitis Suppurativa Patient Self-Advocacy Initiative
Our Democratic Social question and answer reputation-based platform. We are patients who not only suffer with Hidradenitis Suppurativa/Acne Inversa but also pride ourselves on being there for other patients as they first learn why they are different from everyone else – often in ignorance as to why, and in self-induced isolation due to stigma and the taboo nature of this debilitating disease. We need to know there is help and hope. We are dedicated to each other. We leverage the latest in technology to assure accessibility and communication for all of us who are geographically isolated.
Creating a patient driven Hidradenitis Suppurativa Advocacy Program Online
Apply to train as a patient support advocate adhering to industry standard professional practice, relying on our massive research database as a centric tool. Leverage ADVOCATE ONLY tools for productivity and patient support including private one-on-one video conferencing, toll-free phone conferencing, and automated scheduling of advocate availability for self-defined commitment. Patients can request dedicated advocate support in one place, like we have never had before.
Patient Quality of Life Big Data Research Initiative
It is unfortunate that some of the largest research projects and the results they produce are held under lock and key. The reasons why anyone would collect useful data and information on the suffering, sell it, hoard it, or not make it available in a transparent fashion to the world is beyond us. Often, and predictably motivated by money and the healthcare industry; this is unfortunate for an orphan disease suffering from a lack of awareness globally.
Reporting on our Activism activities at large and patient resources for change
Our petition work, our Washington DC Awareness blog, and more. Social media guides to quick start patient awareness efforts for their own personal projects. Free resources to start your own HS awareness websites and blogs, guides on how to and where to focus social media activity and powerful tools for publishing automation to make sure your efforts are not in vain and produce life-changing results. A scam reporting feature for patients to report on Internet predators that often prey on us, and a public “WALL OF SHAME” to display said offenders for the sake of awareness and patient safety online.
A Mobile APP for Patients seeking first time help and support
This patient profile can then be used to educate their local physicians with a heavy complement of supporting science and data. A dedicated resource reporting on the latest clinical practice and research publishing to resolve a notorious misdiagnosis pandemic for patients that has been status quo for centuries due to a lack of HS education and awareness. Patients seeking first-time help and support can complete a profile detailing their story and disease pathology.
Open Access Medical Image Libraries for Hidradenitis Suppurativa Research
The medical research community often only releases published papers with restriction to access, or journal paywalls. Entire medical image libraries for these purposes and only the purpose of science should be but are not readily available. Patients will be able to donate their images either anonymously or publicly for education, awareness and research at large. Images submitted will include a complement of descriptive narrative and patient self-staging of our disease when possible.
We are building a database of known Dermatologists and Physicians that treat Hidradenitis Suppurativa patients
Publishing over 65,000 USA nationwide open data physician records with geo mapping. 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 inception of the disease.
Curating the most effective and talked about therapeutical self-service methods and in-home products
A growing inventory of In-Home Therapies, Popular Products, and Self-Service Relief Methods for Patients is now in one place for the first time. This singular resource is now connecting this important topic as a dedicated resource for everyone; forever. For patients like us that rely on a community of private support groups online for the majority of our answers and information, often the most active topic of chatter are strategies, methods and in-home products that are used for Self-Service relief and therapy. Until now, there has never been a singular source where a patient could access a comprehensive curation of items and publishing on this important topic all in one place.
Hidradenitis Suppurativa and Relationships
Our sole intention with this project is to profoundly impact our isolated community and change lives. A new Hidradenitis Suppurativa dedicated social website for dating, making new friends as well as forging bonds between patients and those who are not, will be ready soon. We want to help you find people who share similar problems and apprehensions. We hope with all our hearts that you will meet the “one”…the one who will understand you, who will become your best friend, your companion, and possibly your lover, if that is what you are looking for. “A happy life does not consist in the absence of difficulties, but in the ability to manage them. Although the world is full of suffering, it is also full of examples to overcome suffering. The best and most beautiful things in the world cannot be seen, nor touched … but are felt with the heart. Life is a succession of lessons which must be lived to be understood.” ~Helen Keller
A Pro Bono alliance of caring law professionals established to support patient first civil health care rights by making themselves available for consultation, retention and representation
Lobbying, legislation, current and historical time lines of global progress involving legislation, policy and global health initiatives. We are building a searchable resource of known lawyers that have argued Hidradenitis Suppurativa cases in local, state and federal court. Have you been in court for malpractice, Patient Health Care Civil Rights Violation or a SSDI appeal? We need to know about it! Did this lawyer represent Hidradenitis Suppurativa properly, and fight that uphill battle to make a judge understand why the circumstance is the same for so many others? That the current laws are out of context with the reality of millions of patients globally? Imagine if, for patient court cases, we had a documented and verified precedence of rulings, that once argued properly, proves we are not alone in the same battles we fight. The fact that we have been isolated from each other, information is not being shared due to geographic barriers. Please send a review of this lawyer and tell us about your case. Laws are created to change, let’s do it for the truth!
Curation of research and holistic methods
Unbiased reporting of current science and research as core, but also the curation of holistic methods often both popular and controversial within Hidradenitis Suppurativa patient support networks for the sake of patient education and awareness.