Rare Disease Week in DC


Discussing the OPEN ACT with Congressman Bilirakis

I am so excited to share with everyone my trip to DC for Rare Disease Week. It was a wonderful opportunity to meet with other rare advocates as well as healthcare industry leaders and political figures to discuss important legislation. Personally, it was a life changing experience where I finally felt that everything I have gone through in the last 313 days can have a positive outcome. While my situation is unique and I have a rare disease, my decisions can be used to trigger the changes necessary to allow all rare patients a chance at a better life.

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