Haystack Project Inc
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
301
X (Twitter)
168
Address
Pinehurst
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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Together, we can make a real impact in communities around the world. Help us bring hope and support.
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News about Haystack Project Inc from their social media (Facebook and X).
- Haystack Project Inc
- 2025-03-14
Grateful for the esteemed panelists who made our first Scientific Workshop a success. (tw) ... more
Liked (0) Commented (0)- Haystack Project Inc
- 2025-02-24
Check out our January/February 2025 Recap here: https://t. (tw) ... more
Liked (0) Commented (0)Discussions
Odpovědí v diskuzi
1
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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Brooklyn Simmons
2 days ago
Odpovědí v diskuzi
1
How can we measure the impact of the Haystack Project's advocacy efforts on healthcare reimbursement policies for ultra-rare diseases?
View
Brooklyn Simmons
2 days ago
Latest reviews
Together, we can make a real impact in communities around the world. Help us bring hope and support.
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
Brooklyn Simmons
Product Manager
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
Brooklyn Simmons
Product Manager
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Transparent, useful, and beautifully designed.
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Product Manager
Clean, community-driven, and full of heart — love it.
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