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Interested in joining the Rare and Ultra-Rare community?
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Contact Us
Interested in joining the Rare and Ultra-Rare community?
Send in the contact form below to receive our monthly call information and more!
Engage in our efforts to support Ultra Rare advocacy.
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Please consider making a tax-deductible donation to support the Haystack Project today.
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.