- One of the key pieces of information that we were given upon arrival was an agenda complete with the Twitter handle of each participant and a hashtag to use when talking about the event on social media. They understand the power of social media and taking the conversation well beyond the walls of the conference room.
- Thats me! At the White House!!
- And this is Francis Collins, the current director of the National Institute of Health and leader of the President's Precision Medicine Initiative. Dr Collins was also one of the scientists who discovered the CF gene back in 1989. He's a celebrity in the CF community! Truly a remarkable man doing remarkable work.
- One of our very own! Emily Kramer-Golingkoff is an adult with CF who was honored by the White House for her work in finding treatment options for her super rare CF mutations. Truly precision medicine.
- Then the conversation started:
- — P. F. Anderson (@pfanderson)Wed, Jul 08 2015 18:23:34
- — Stanford Medicine X (@StanfordMedX)Wed, Jul 08 2015 18:26:33
- — Erin Moore (@ekeeleymoore)Wed, Jul 08 2015 18:43:57"Amazon can tell me what kind of chips I should buy, but no one can tell me what targeted therapy my child needs for his cancer" #WHChamps
- — Erin Moore (@ekeeleymoore)Wed, Jul 08 2015 19:08:13
- — Regina Holliday (@ReginaHolliday)Wed, Jul 08 2015 19:26:28It's hilarious that an event focused on individual diseases/patient choice, assumes that we all default to privacy over sharing #WHChamps
- — John Wilbanks (@wilbanks)Wed, Jul 08 2015 19:12:17Doing this since 2004. Surreal and wonderful to hear calls for a data commons, data donation at the White House. Advocacy matters. #WHChamps
- — Leonard Kish (@leonardkish)Wed, Jul 08 2015 19:49:26
- — Erin Moore (@ekeeleymoore)Wed, Jul 08 2015 19:56:18
- — P. F. Anderson (@pfanderson)Wed, Jul 08 2015 19:56:22
Precision Medicine Champions of Change
On July 8, 2015, I was invited to attend an event at The White House to honor 9 Champions of Change in Healthcare. I'm so proud to call several of them my friends. Here is a glimpse of what the day was like!
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