The Haystack Project

August 4, 2020

Dup15q Alliance is proud to be a member of The Haystack Project, committed to the Rare and Ultra Rare Disease Community. It brings together Innovators, Patients and Caregivers to educate and advocate for policies that recognize the unique circumstances of extremely rare conditions and treatments.


There is no question that the incentives contained in the Orphan Drug Act (ODA) have stimulated development of products to treat rare disorders. Emerging treatments for rare and ultra-rare disorders, particularly those without a potential non-orphan use, are a unique subset of orphan products. They require a focused, unified advocacy strategy to ensure continued viability. In today’s environment, rare disease treatments that “deserve” incentives must be differentiated from those for which orphan designation is a savvy step in a broader commercialization strategy.


The ODA did not include the reimbursement and market access incentives so critical in today’s environment of aggressive utilization management, which is steadily creeping into the orphan and ultra orphan universe.


The creation of a coalition dedicated to promote the unique standing of rare and ultra-orphan products will provide the focused, amplified voice necessary to ensure that lawmakers consider “payer side” incentives that were never envisioned in 1983, and that should be added in light of the changes our healthcare system has seen since the early 80’s. Started in mid-2016, the coalition that is today known as the Haystack Project, has been bringing together patient organizations representing extremely rare diseases to learn from each other and systematically speak out about ICER, the QPP, Medicaid and Medicare (including inpatient, outpatient, pharmacy) and 340b.



For a full list of Proud Participants visit:


More information can be found at


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