Rare Caucus leaders Reps. Gus Bilrakis (R-FL) and G.K. Butterfield (D-NC) hosted Haystack Project at a Rare Caucus Roundtable, inviting Rare Caucus members’ staff. Four patient organizations active in Haystack Project shared information about their rare conditions and the patients they represent and the Haystack Policy Priorities developed by the groups. The discussion was robust and the follow-up interest even better!
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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.
