This platform aims to help fellow rare disease sufferers from all over the world to research, collaborate, find specialists, upload medical records and consult with doctors and researchers.
My Experience with a rare disease
My personal experience that motivated me to work towards this platform, is my hospitalization due to an Autoimmune disorder: Henoch-Schönlein Purpura (HSP). HSP is a rare and extremely painful auto-immune disease with no known cause, no known cure. The disease usually lasts a few months for most but became my constant high school companion for 4+ years. Being in the ICU gave me a feeling of helplessness at the very little understanding of my disease but also a sense of gratitude and, frankly, hero worship for the intelligent and extremely caring nurses and doctors working round the clock in selfless service of humanity.
It's not easy to find the right information
As I started to research HSP to understand it better and get help in managing my condition, I learned that it was not easy. The information is scattered across many links or sometimes embedded in medical or research portals to which access is restricted only to medical professionals. Some of the information is available on blogs or commercial websites or chat forums and it is difficult to determine if the information is authentic or not. There is no easy way to locate specialists treating and researching this condition or to consult them and share specific records with them. There is also no easy way to learn from or share your findings with other patients and their caregivers. I also realized that this is not a problem just restricted to HSP but exists for all rare diseases. This platform will solve these issues in compliance with HIPAA and other patient privacy regulations.
Hello, I am a senior at Monroe Township High School in NJ. “Making Friends and Making a Difference” is my guiding philosophy in life. I love to lead and get involved in various initiatives that can help our communities.
My passions are entrepreneurship, and everything related to Biology, Medicine and Genetics. I serve on my school boards of Distributive Education Clubs of America (DECA) and Health Occupation Students of America (HOSA). My existing startup is focused on philanthropy and helping the homeless.
I love all sports, especially basketball and love reading science magazines and listening to sports podcasts. Harry Potter series and the Double Helix are my favorite books. I am an animal and nature lover and have two pets: Newton, a golden doodle and Fruity, a cockatiel.
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