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Precision Medicine Initiative

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On January 30, 2015, in an event in the East Room of the White House President Barack Obama announced details about the Precision Medicine Initiative – a bold new enterprise to revolutionize medicine and generate the scientific evidence needed to move the concept of precision medicine into every day clinical practice. Genetic Alliance CEO, Sharon Terry was present for the announcement. “This is what Genetic Alliance has been working towards for years. I am delighted by the President’s recognition of the power of participants in this initiative. Together with other advocates, citizen scientists, and research participants, we are thrilled to roll up our sleeves and get started!”

Francis Collins, Director of the National Institutes of Health, in a small luncheon following the event for research participants and advocates, spoke with great enthusiasm of the need to gain better insights into the biology of all diseases to make a difference for the millions of Americans who suffer from them. Dr. Collins paved the way for this day with his visionary leadership in sequencing the human genome and in leading the National Institutes of Health. Collins was clear that this initiative must be led by us, the people.  He in fact stated something Genetic Alliance often declares: "The word 'patients' is not the right one, this is about participants, and really about partners."

Kathy Hudson, Deputy Director for Science, Outreach and Policy declared, “The Initiative will set the foundation for new ways of engaging research participants, sharing health data and information, and employing technology advances to mine the information for comprehensive results. This is not lip service, this is real commitment.”

The excitement in the room was palpable. Over the next few months details will be fleshed out. Genetic Alliance is very excited because we are already working hard in what will undoubtedly be one of the key components of the inititiave the Patient-Centered Outcomes Research Network (PCORnet).  Further, our own Platform for Engaging Everyone Responsibly is a perfect fit for some of the needs of this Initiative to enable true engagement. Genetic Alliance’s network longs for the day when interventions alleviate suffering. The millions of individuals, families and communities all tied together through the power of participant-centric solutions have been practicing for this day. We stand with Obama, Collins and Hudson, and make the same commitment. Let’s revolutionize the path to health.

For more information:

Visit the NIH’s webpage:

And this article about the Precision Medicine Initiative written by Drs. Collins and Harold Varmus in New England Journal of Medicine:





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