NIH Director Dr. Francis S. Collins at the 10th Moebius Syndrome Conference

Honestly my favorite part of the 2012 Conference. I totally teared up. Hope he can make it again to DC this year.

Today is Rare Disease Day, and this song sums it all up for me quite succinctly. It’s about the people I’ve met and continue to meet due to my rare disorders. They transformed my life, gave me my sense of self, connected me to the amazing CCI world… and so much more. I look forward to what else is in store for me on this journey.

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