Why patients have begun to lead the way in the fight against rare diseases

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There are hundreds of millions of rare disease patients, half of them children, whose conditions aren’t getting enough funding for research and treatment. But by banding together, the patients are changing how the medical community responds to their diseases. Several years ago, I was working in the White House Office of Science and Technology Policy where I had the privilege of helping lead the effort to develop President Obama’s Precision Medicine Initiative—an effort that aimed to catalyze a new era of medicine where patients receive the right treatments at the right time. Read Full Story


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