Participants — The Haystack Project

Proud Participants

ACD Association.jpg

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acoustic neuroma Association.jpg

AIM at Melanoma Foundation.png

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Amyloidosis support groups.jpg

barth syndrome.jpg

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Born a Hero.jpg

caseys cure.jpg

cfc international.png

cockayne syndrome network.jpg

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costello syndrome.jpg

CSNK2A1 Foundation-logo_640.png

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The FCS Foundation.jpg

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International SCN8A Alliance-DEE-P Connections.jpg

galactosemia found.jpg

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GO2 Foundation.jpg

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Healthtree Cure Club.jpg

Hide and seek foundation for lysosomal disease.jpg

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Inflammatory Breast Cancer.png

genetic alliance.jpg

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histocytosis assoc.jpg

hope for marion.jpg

hope for stomach cancer.jpg

Kennedy's Disease Association.png

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Minority Quality Forum.jpg

Mucolipidosis type IV.png

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National Tay-Sachs and Allied Diseases Association.jpg

NBIA Disorders Association.jpg

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organic acidemia assoc.jpg

Pachyonychia Congenita Project.jpg

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Rare New England.jpg

Alliance member-RDDC.png

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International Rett Syndrome Foundation.jpg

Rett Syndrome Research Trust.png

rothmund thomas syndrome.jpg

sarcomea found.jpg

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SLC6A1 Connect.jpg

snyder robinson foundation.png

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Taylors Tale.jpg

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united msd foundation.jpg

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williams syndrome log.jpg

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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.