2016 Rare Disease Week on Capitol Hill

BORN A HERO was at the 2016 Rare Disease Legislative Advocates (RDLA) conference on Capitol Hill. This event is a life changing experience. We learned so much and made so many amazing connections. We were given the opportunity to speak to our Senators and Representatives about passing bills that will be beneficial to us and our Rare Syndrome community. BORN A HERO is so happy to be a member of the EveryLife Foundation and to be involved with RDLA.

To see what happened this year at Rare Disease Week on Capitol Hill go to rareadvocates.org/rdw. Learn what Rare Disease Week on Capitol Hill is all about and watch some of the talks that were given by professionals in the field.

BORN A HERO (far right) with Assistant Julia Tierney (second from right) for Senator Patty Murray!! Patty Murray is very involved with the RDLA and helping the Rare Disease community and we are so proud of her for all that she done. Here we are also a standing with the Founder of EveryLife Foundation Emil D. Kakkis (far left) and some heroes of the rare disease community.

To learn more about the EveryLife Foundation go to everylifefoundation.org

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