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The Haystack Project

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The Haystack Project
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Featured
POV Report - Choroideremia
Mar 3, 2023
POV Report - Choroideremia
Mar 3, 2023
Mar 3, 2023
Press Release: Haystack Project Applauds the Inclusion of the HEART Act  in the User Fee Package
Jun 14, 2022
Press Release: Haystack Project Applauds the Inclusion of the HEART Act in the User Fee Package
Jun 14, 2022
Jun 14, 2022
Press Release: New Report for Uveal Melanoma Patients
Jan 10, 2022
Press Release: New Report for Uveal Melanoma Patients
Jan 10, 2022
Jan 10, 2022
POV Report - Uveal Melanoma
Dec 26, 2021
POV Report - Uveal Melanoma
Dec 26, 2021
Dec 26, 2021
About Health Equity in Access to Treatment (HEAT)
Jan 10, 2021
About Health Equity in Access to Treatment (HEAT)
Jan 10, 2021
Jan 10, 2021
About the Advocacy Empowerment Institute
Jan 10, 2021
About the Advocacy Empowerment Institute
Jan 10, 2021
Jan 10, 2021
Defining Value - For Us or With Us: Moving Us to Patient Oriented Value
Dec 31, 2019
Defining Value - For Us or With Us: Moving Us to Patient Oriented Value
Dec 31, 2019
Dec 31, 2019
Proposed adaptation of the ICER value framework for the assessment of treatments for ultra-rare conditions
Aug 6, 2017
Proposed adaptation of the ICER value framework for the assessment of treatments for ultra-rare conditions
Aug 6, 2017

Explore the ICER value framework which presents a set of proposed adaptations to the ICER value assessment framework when the topic under review is a treatment for an “ultra-rare” condition. 

Aug 6, 2017
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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.