The Haystack Project urges the OIG to develop a safe harbor to enable financial assistance from charitable entities, and directly from a manufacturer, so that patients can access the rare disease treatment they need.

October 20, 2017

Haystack Project Joins Fellow Patient Orgs in Calling Attention to the MassHealth Section 1115 Demonstration Amendment→

October 20, 2017/ Rebecca Balliet

ICER Ultra-Rare Disease Comment→

September 25, 2017/ Rebecca Balliet

PPS-340b comment Letter→

September 12, 2017/ Rebecca Balliet

September 10, 2017

MACRA Letter - CY 2018 Updates to the Quality Payment Program CMS-5522-P→

September 10, 2017/ Rebecca Balliet

August 21, 2017

Ultra Rare Stakeholders QPP Comment→

August 21, 2017/ Rebecca Balliet

August 06, 2017

Comment Letter on IPPS from National MPS Society→

August 06, 2017/ Rebecca Balliet

Read comments from the National MPS Society on IPPS urging making access to treatment for patients with rare diseases a priority.

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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.