A RARE ACCESS Discussion… As advocates come together during Rare Disease Week, Haystack Project and the Rare Cancer Policy Coalition will host an interactive Panel Discussion on Access and Value in Rare. Cutaneous Lymphoma Foundation will lead the discussion for rare cancers.
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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.
