We are committed to the Ultra Rare Disease Community. Bringing together all stakeholders to educate & advocate for reimbursement policies.
Washington, DC
Joined October 2017
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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!
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-ac…
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!
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/ax66HPXbpE9Jym8JA
. @RepShriThanedar Happy Rare Disease Day #Michigan #13th Please thank Rep Thanedar for Cosponsoring Protect Rare HR6094. This bill will provide much-needed guidance to #Medicaid and #Medicare to cover off-label treatments prescribed by our doctors for #RareDiseases
@RepMMM Happy Rare Disease Day! Thank Rep Miller Meeks for taking time and thought on this day to Cosponsor Protect Rare HR 6094. This bill will provide much-needed guidance to Medicaid and Medicare to cover off-label treatments prescribed by our doctors for #RareDiseases
Are you a Rare Disease Patient, Caregiver, Family Member, or Friend? Take a Minute to Click on This! forms.gle/MwruXvWRiiN3SFiJ9
