RAAP is a non-profit organization that is a coalition of patient, provider, and life sciences stakeholders that advocates for rare disease access.
Joined September 2022
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RAAP is pleased to welcome Bristol Myers Squibb @bmsnews as our newest member!
BMS joins RAAP’s growing coalition of patient advocates and life sciences stakeholders addressing access and coverage challenges facing people living with rare diseases.
rareaccessactionproject.org/…
For 16 years, the Klein family has fought for a diagnosis, treatment, and access to care for their daughter. They’re still fighting.
No one should have to beg to live.
Watch their story: youtube.com/watch?v=wiLlI66M…
#RareDisease #PatientAccess
Lower drug costs should not mean losing access to treatment.
RAAP’s first PDAB policy alert explains why reimbursement caps threaten patient access and what policymakers should prioritize instead.
rareaccessactionproject.org/…
#PatientAccess #RareDisease
New analysis highlighted by BioXconomy raises concerns that upper payment limits (UPLs) could create unintended consequences for patient access, including higher cost-sharing and increased utilization management.
bioxconomy.com/pricing-and-c…
#RareDisease #PatientAccess #UPL #PDAB
A medication patients cannot access is not affordable.
RAAP worked with Dominique Daniels in Maryland last year. In Maryland Matters, she shows how price caps disrupt the supply chain, threatening access to life-changing treatments.
marylandmatters.org/2026/09/…
#PatientAccess #PDAB
Governor Newsom signed AB 1887 into law! RAAP applauds this step toward timely access to FDA-approved treatments for Californians with rare diseases and fewer insurance-driven delays.
Thank you to all who supported this effort!
#RareDisease #PatientAccess #AB1887
UPLs threaten patient access, especially for rare diseases.
Join Jennifer Snow, William Sarraille and Michael Eging for RAAP’s “Follow the UPL” webinar.
Sept. 29 | 3–4 PM ET
tinyurl.com/RAAP-WEBINAR#Rar… #PatientAccess
🤖 Made with AI
September is Newborn Screening Awareness Month. Newborn screening helps identify serious, treatable conditions early and saves thousands of lives each year. RAAP urges Congress to pass the NBSSLA.
#NewbornScreening #NBSSLA #RareDisease
At the 2026 NCSL Legislative Summit, RAAP released Follow the UPL and discussed how Upper Payment Limits can affect access throughout the pharmaceutical supply chain and why patients need a voice in decisions affecting their care.
Watch: youtube.com/watch?v=f1Oqg_2Y…
During the 2026 NCSL Legislative Summit, RAAP brought together policymakers, advocates, and patients for a discussion on supporting innovation and improving outcomes for people living with rare diseases.
Watch the full policy breakfast: youtube.com/watch?v=tNVL5GXC…
RAAP submitted comments to CMS on its proposed CY 2027 OPPS rule, urging the agency to protect cell and gene therapies from bundled payments, align 340B payments with acquisition costs, and strengthen transparency. linkedin.com/feed/update/urn…
RAAP urges @GavinNewsom to sign AB 1887 and protect timely access to FDA-approved treatments for Californians living with rare diseases.
Read our letter: rareaccessactionproject.org/…
Join us for a PDAB webinar hosted by RAAP on May 6th at 1 pm (EST). Our expert panelists will provide valuable insights on what we learned from the 2024 legislative sessions and how to stay ahead of the curve in 2025. Register: tinyurl.com/RAAP-PDAB
The Rare Access Action Project (RAAP) applauds the courageous veto of PDAB legislation, SB 274, by Virginia @GovernorVA last night to protect rare disease patient access to life-saving therapies. rareaccessactionproject.org/…
#raredisease #PDAB
@AccessRare sponsored and ran a panel during the Learning Hub portion of the National Conference of State Legislatures (NCSL) Legislative Summit held in Indianapolis, IN. CLICK Link to see the panel discussion.
youtube.com/watch?v=GIeHprWF…
#RareDisease #OrphanDrugs #Patientaccess
The #InflationReductionAct was hailed by
supporters as a major milestone for reducing
prescription drug prices. @AccessRare is warning that certain provisions could harm innovation in the #orphandrug space. ow.ly/wQ0O50P9Tv0 #Raredisease
Patients with #rarediseases face devastating obstacles in being diagnosed & have limited options for treatment. SB 351 could drastically limit genetic research leading to new therapies & cures. Read more here: ow.ly/my0l50OskKT @SteveDaines @SenatorTester
Rare Access Action Project retweeted
Right now, we cover over 900 rare diseases on Patient Worthy - but there is still so much left to learn!
What #RareDisease would you like to see more awareness about?
#RareDiseasesChat
Did you know that a rare disease is one that affects fewer than 200,000 people in the U.S.? There are nearly 7,000 rare diseases & more than 25 million Americans have one. Learn more with @medlineplus: medlineplus.gov/rarediseases… #RareDiseasesChat
PATIENT PROTECTION BILL WINS BIG IN UTAH SENATE! SB-184 (1st Substitute) Wins Unanimous Vote in the Utah Senate Business and Labor Committee. Learn more at rareaccessactionproject.org/… #RareDiseases #RareDiseaseDay #healthcare
Rare Access Action Project retweeted
🎉 Today marks the first day of Rare Disease Awareness Month 2023!
📣 Join us this month to raise awareness for the 300 million people living with a rare disease worldwide!
👉 Find out how you can get involved: cutt.ly/w9tI5Pb
