How Washington Can Change Rare Disease: Part Four

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President Obama announced the Precision Medicine Initiative to a room full of doctors and representatives from the healthcare industry. While this is an exciting time for patients dealing with various forms of cancer and other conditions, noticeably absent from the plan was the rare disease community. In fact, I have yet to really encounter anything from the PMI that focusesĀ on researchingĀ rare diseases despite all the rhetoric with understanding genetics and how medicine can taylor treatments to suit an individual.

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From Fearing To Facing My Rare Disease

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If you told me in May 2014 that I would complete a 5k nine months later, I would be shocked. In fact, I would probably think you were crazy. I thought that because I was diagnosed with immune thrombocytopenia, my life was over. There was no hope, only an endless battle with needles and platelet counts. Today I proved myself wrong, and it felt so good! Continue reading