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Rare Disease Week: Anne OConnor Smith

Advocacy Stipend Attendee Summary by Anne OConnor Smith

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I attended the Tuesday night screening of Tin Soldiers which was an extremely moving and well executed documentary of the experience of FOP patients around the world. FOP is an extremely rare crippling disease.

As a team of rare disease patients, family and foundation members from Florida, we met with our state House representatives and Senators or their staff. We each briefly shared our rare disease story and explained the relevance to the legislative asks below.

The BENEFIT Act requests that patient experience data is included on the FDA form when drugs are considered for approval. I thanked the two Florida House representatives that we met with for already participating in The Rare Disease Caucus. We asked our Florida senators to join The Rare Disease Caucus but unfortunately one senator does not join Caucuses.

Our representatives seemed genuinely interested in our stories and Darren Soto, Florida House District 9, met with us in person and promised to support rare disease legislation. It was an enlightening experience.