The OPEN ACT is Part of 21st Century Cures!

Yesterday, we had an action day to gather support for HR 971, the OPEN ACT. I’m excited to share that it was a success! The OPEN ACT will now be a part of the 21st Century Cures initiative. I was on a conference call a few weeks ago and inquired about the possibility of the HR 971¬†being grouped in, but no one was completely sure of the outcome. I hoped that continuing to push for support for the bill would make it happen. After all, there is strength in numbers! Despite being really sick today, I am over the moon from this great news. However, our work isn’t finished yet!

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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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