PROTECT Rare Act Introduced in the Senate
Haystack Project’s Protect Rare Act (S.3551) has just been introduced in the Senate, led by bipartisan duo Sens. Tillis and Heinrich! Thank you to both Senators and to all the tireless advocates. 2026 will be our year to get this passed!!!! Rest, relax, and come back refreshed to join us in achieving this milestone!
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Haystack Project Releases Report: “Redefining Rigor:
Fit-for-Purpose Trials to Unlock Rare Disease Therapy”
Watch the Webinar Below:
Read the White Paper here.
Haystack Project working with Janet Woodcock on “Rare Disease Approvals”
Haystack Project is a non-profit enabling rare and ultra-rare disease patient advocacy organizations to highlight and address systemic obstacles to patient access. Our core mission is to evolve health care payment and delivery systems to make innovative quality treatments accessible to the patients they were meant to reach.
The Siegel Rare Neuroimmune Association (SRNA) is first to leverage Haystack Project’s Health Equity in Access to Treatments (“HEAT”) initiative. SRNA is working with Haystack Project to investigate health equity issues in neuroimmune disorders. Specifically, the project seeks to (a) understand variability in access, disease burden and lived experience of patient and caregivers, (b) proactively identify the barriers to diagnosis, specialists and treatments that shape a Black, Latinx, Asian or Native American’s journey, and (c) assess and address the representativeness of the SRNA’s outreach, education and members
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Haystack successfully advocated for patients and experts to have an increased role during the FDA review process for treatments for rare diseases!
Read more here.
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“From the first in-person Haystack meeting, I was so impressed with the quality of speakers and the depth to which they address and seek solutions to access barriers for rare therapies.”
“As a small, rare disease advocacy organization, Haystack helps us stay in the loop on policies that could impact our patients. They keep us informed of the ever-changing landscape around access issues and fill an important role in educating us on various healthcare initiatives.”