Senators Scott (R-SC) and Casey (D-PA) co-invited Haystack Project patient groups to present their policy priorities to HELP and FINANCE Committee staff. Since both Senators sit on both committees, we had a very robust turnout! Haystack’s patient groups fielded a range of questions and it was a great conversation that has led to ongoing relationships and interest in the priorities presented.
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The Haystack Project is a 501(c)3 nonprofit that brings together patients organizations representing patients suffering from or caring for patients with extremely rare diseases. Our mission is to educate policymakers and other stakeholders about the need for policies that recognize the unique circumstances of extremely rare conditions and treatments and expand incentives critical to ensuring they can reach patients.
