Hello Doctor: Let’s Manage Our Rare Disease

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Hello Doctor.  Let’s Manage Our Rare Disease Together!
Occasionally, there comes a time in ones life, when something we are introduced to truly speaks to us and drives us with fervent passion.  Rare Disease has been that passion for me for over 10 years, and during that time, I have done everything in my power to keep my rare disease child alive, all the while managing to spread much needed awareness about his disease and the needs of the rare disease community as a whole.  During this time, amidst all the responsibilities, learning curves, and relationships built, I have found there are certain aspects of rare disease management which requires intense focus.
As a consult to many patients and their caregivers, I find myself lending value to the importance of maintaining accurate and accessible documentation related to their illness.  When we are thrust into the whirlwind of a diagnosis and then immediately into managing our rare disease, many of us lose sight of the need to stay organized with all the tests, data, and treatment protocols necessary to manage day-to-day living.  And quite frankly, many don’t even know “where to start”!!
Hello Doctor is a new mobile app that empowers people to control their health. The team won the prestigious DEMO competition in Silicon Vally and the iPad app is getting great reviews:  Here are the latest ones on Forbes and ABCnews.
One thing you have learned about me, is I do my research and promote those issues and products that have a substantial affect in rare disease health, and of which can truly make a positive difference.  I believe Hello Doctor can be that valuable tool that makes the distinction between a well managed disease, and one that is not.  An app that truly can help make many lives that much less complicated.
The idea of making an impact on my son’s health has always been important to me, and now that he has progressed so well with his disease and we have a way to stay more organized, life is that much easier.