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The Haystack Project

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View our past newsletters to keep up-to-date on current events affecting our rare communities:

Jan./Feb. 2025

March 2025

April 2025

May 2025

June 2025

January 2024

February 2024

March 2024

April 2024

May/June 2024

July 2024

September/October 2024

December 2024 - YIR Edition

January 2023

February 2023

March 2023

April 2023

May 2023

June 2023

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August 2023

September 2023

October 2023

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December 2022

November 2022

October 2022

September 2022

July 2022

June 2022

May 2022

April 2022

March 2022

February 2022

January 2022

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  • Policy/Comments/
    • Inflation Reduction Act
    • Medicare
    • Section 340b
    • Medicaid
    • FDA
    • ICER
  • Patient Stories/
  • Join/
  • Take Action/

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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.