Haystack Project

We are committed to the Ultra Rare Disease Community. Bringing together all stakeholders to educate & advocate for reimbursement policies.

[Haystack Project @HaystackProject]

Grateful for the esteemed panelists who made our first Scientific Workshop a success! Your insights on changes to rare disease studies at the FDA were invaluable. Special thanks to Dr. Janet Woodcock for leading the effort!

Want to learn more or support Haystack Project? DM us!

[Haystack Project @HaystackProject]

Check out our January/February 2025 Recap here: https://t.co/I29HvVib27

[Haystack Project @HaystackProject]

CEO of Haystack Project, Kara Berasi, provides public comment at the Advancing Rare Disease Therapies Through an FDA Rare Disease Innovation Hub https://t.co/Tc1hf9pJ5a

[Haystack Project @HaystackProject]

Haystack writes CMS regarding what data the agency should consider in negotiating drug prices per the https://t.co/vywWnoO54d

[Haystack Project @HaystackProject]

This letter to CMS covers the numerous issues with implementing the negotiation provisions in the IRA, especially the impact on rare disease patients of CMS’ (mis)interpretation of “qualified single source drug” (QSSD). https://t.co/sIDeAxIW7t

[Haystack Project @HaystackProject]

Inside Health Policy highlights Haystack Project’s call for change at recent FDA Listening Session. Conflict of interest rules must accommodate the critical need for rare disease clinician experts on Advisory Committees with appropriate disclosures.

https://t.co/Tc1hf9pJ5a

[Haystack Project @HaystackProject]

Haystack Project challenges CMS to address low volume/high-cost DRG problem. Read our IPPS comments here. https://t.co/FFlmSIpCik

[Haystack Project @HaystackProject]

Haystack Project highlights all the ways Medicare Advantage plans can be improved for rare disease patients https://t.co/fS69BfH8us

[Haystack Project @HaystackProject]

https://t.co/FzfezdAr6Q

[Haystack Project @HaystackProject]

EXTRA! EXTRA! Read All About It; Haystack Project April 2024 Recap https://t.co/aJ6qa6kMiM

[Haystack Project @HaystackProject]

Haystack gives CMS feedback on what our patients think about the MP3’s six model documents.
https://t.co/EIeZWSMeiK

[Haystack Project @HaystackProject]

Great discussion with BMS SVP on Value-Based Arrangements and Rare at Haystack’s Speaker Series… Thank you, Ranjani Durham!

https://t.co/CP3c4EeHRx

[Haystack Project @HaystackProject]

Kara Berasi, HP’s CEO, will be attending the World Orphan Drug Conference, and participating on a panel on April 25th from 3:55-4:35 PM called “How Policy Moves Forward with Patients at The Center”

If you're attending this, please contact Kara to meet up or attend the panel!

[Haystack Project @HaystackProject]

Read more here: https://t.co/53s3mKJ5Fx

[Haystack Project @HaystackProject]

https://t.co/53s3mKJ5Fx

[Haystack Project @HaystackProject]

Haystack Project submits a comment letter to CMS regarding how to make the new “smoothing” program as patient-friendly for rare disease patients as possible. https://t.co/tQhOdvXkWM

[Haystack Project @HaystackProject]

Check out our February 2024 Recap here: https://t.co/Ja1mZap3hr

[Haystack Project @HaystackProject]

Haystack calls out the need to monitor for utilization management, esp. in protected classes, as IRA rolls out.
https://t.co/YLaVBrY9bV

[Haystack Project @HaystackProject]

Excited for Rare Disease Day! The Protect Rare Act (HR 6094) is on the agenda at the Health Subcommittee meeting!! Help us celebrate by asking your Representative to cosponsor the bill here: https://t.co/uNR7aZyfb4

[Haystack Project @HaystackProject]

Energy and Commerce, Health Subcommittee Legislative Hearing
Hearing on Rare Disease Bills @RepGuthrie @RepAnnaEshoo @RepLarryBucshon
Including our push for Protect Rare HR 6094
Today Thursday, February 29th
10:00am
Livestreamed at https://t.co/eI9FI4C6AK