On February 28th, 2024, the first-ever White House Rare Disease Forum took place. Hosted by the White House Office of Science and Technology Policy, this forum provided a platform for…
Before you read on, make sure you have read Part 1 of our interview. In Part 1, Bridget discusses what STXBP1 disorders are and the diagnostic journey her family went…
“Together, we can do hard things.” That’s the mission of Clara Inspired, a nonprofit organization that aims to raise awareness and funds to cure genetic disorders like STXBP1 disorders. It’s…
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