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  • Home/
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    • Board and Advisors
  • Priorities/
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    • Rare Disease Approvals
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April 01, 2023

A young boy’s nightmare diagnosis, and the $3 million one-time treatment that will likely save his life→

April 01, 2023/ Michelle Osburn

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April 01, 2023/ Michelle Osburn/ /Source
Patient Stories

Michelle Osburn

  • Haystack's comments on CMS' ...
  • Press Release: Victoria Blatter ...

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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.