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June 03, 2021

The parents hoped an existing drug might keep their kids from having seizures. Then they saw the price→

June 03, 2021/ Rebecca Balliet
June 03, 2021/ Rebecca Balliet/ /Source
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Rebecca Balliet

  • Support House Passage- HEART Act ...
  • ALS groups to the FDA and drug ...

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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.