Energy and Commerce, Health Subcommittee Legislative Hearing Hearing on Rare Disease Bills Rep. Brett Guthrie Rep. Anna G. Eshoo Larry Bucshon, MD Including our push for Protect Rare HR 6094 Today Thursday, February 29th 10:00am Livestreamed at energycommerce.house.gov/events/health-…

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: forms.gle/ax66HPXbpE9Jym…

Haystack calls out the need to monitor for utilization management, esp. in protected classes, as IRA rolls out. haystackproject.org/resources-3/20…

Check out our February 2024 Recap here: static1.squarespace.com/static/5966cc2…

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. haystackproject.org/resources-3/20…

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Read more here: static1.squarespace.com/static/5966cc2…

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!

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

Haystack gives CMS feedback on what our patients think about the MP3’s six model documents. haystackproject.org/resources-3/20…

EXTRA! EXTRA! Read All About It; Haystack Project April 2024 Recap static1.squarespace.com/static/5966cc2…

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Haystack Project highlights all the ways Medicare Advantage plans can be improved for rare disease patients haystackproject.org/resources-3/20…

Haystack Project challenges CMS to address low volume/high-cost DRG problem. Read our IPPS comments here. haystackproject.org/resources-3/20…

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. haystackproject.org/heart-act

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). haystackproject.org/resources-3/20…

Haystack writes CMS regarding what data the agency should consider in negotiating drug prices per the IRAhaystackproject.org/resources-3/20…

CEO of Haystack Project, Kara Berasi, provides public comment at the Advancing Rare Disease Therapies Through an FDA Rare Disease Innovation Hub haystackproject.org/heart-act

Check out our January/February 2025 Recap here: static1.squarespace.com/static/5966cc2…

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!