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August 13, 2017

Approximately half of identified rare diseases do not have a disease-specific advocacy network or organization supporting research and development

August 13, 2017/ Rebecca Balliet
August 13, 2017/ Rebecca Balliet/

Rebecca Balliet

  • 80% of rare diseases are genetic in ...
  • Of the approximately 7,000 rare ...
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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.