Haystack Project Inc

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We are committed to the Ultra Rare Disease Community. Bringing together all stakeholders to educate & advocate for reimbursement policies. Haystack Project brings together the stakeholders connected to rare and ultra rare conditions to educate and advocate for public policies that recognize the unique circumstances of extremely rare conditions, their diagnosis, treatment and care.

Founded

2019

Facebook

301

X (Twitter)

168

Address

Pinehurst

Address: 45 Wilson Rd, PinehurstWeb: Sign in to see organisation websiteFacebook: Haystack-Project-912608955546861X (Twitter): HaystackProjectVolunteers: 8Revenue: 226966ICO: 833367375

The Haystack Project The Voices of Rare and Ultra Rare Haystack Project is a nonprofit enabling rare and ultrarare 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. Haystack Project working with Janet Woodcock on Rare Disease Approvals Read Pink Sheet Article here. Read Inside Health Policy Articles here and here.

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Andrew

How can we measure the impact of the Haystack Project's advocacy efforts on healthcare reimbursement policies for ultra-rare diseases?

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Eva

What strategies can patient advocacy organizations implement to effectively engage underrepresented communities in discussions about access to treatments for rare diseases?

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Ellen

Absolutely inspired by the work Haystack Project is doing! Advocacy for ultra-rare diseases is so important – let’s ensure every patient has a voice and access to the treatments they deserve. 💙🙌 #RareDiseaseAwareness

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Veronica

Thank you, Haystack Project, for your dedication to health equity and patient access! Together, we can break down barriers and change the narrative for those living with rare and ultra-rare diseases! 🌟❤️ #HealthEquity #PatientAdvocacy

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