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.

Resources

Rare Disease Week invitation→

Haystack seal→

Haystack Project To Respond to CMS RFI on Access to Care and Coverage for Medicaid Patients→

Haystack Project's sign-on letter commenting to CMS' proposed NCA for monoclonal antibodies→

Haystack Project's comment letter on the HHS Notice of Benefit and Payment Parameters for 2023 of the Patient Protection and Affordable Care Act→

How medicine erased Black women from a "White Man's Disease"→

Copay Accumulator Fact Sheet→

Press Release: New Report for Uveal Melanoma Patients→

POV Report - Uveal Melanoma→

Haystack's SDOH caucus letter, dated 12-10-2021→

Haystack Project Applauds Introduction of the Access to Rare Indications Act→

Guidance on Coordinating Care Provided By Out-of-State Providers for Children with Medically Complex Conditions→

Reasonable & Necessary →

Medicare Part D Out of Pocket Letter→

Tuberous Sclerosis Alliance opposes MACPAC recommendations regarding differential Medicaid rebates for FDA accelerated approval drugs→

Hospital Inpatient Prospective Payment Systems for Acute Care - APF IPPS Letter→

Hospital Inpatient Prospective Payment Systems for Acute Care→

CURES 2.0 Letter

Support House Passage- HEART Act 5.06.21 (Senate) (1)→

Support House Passage- HEART Act 5.06.21 (House) →

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