Rare Access Action Project

RAAP is a non-profit organization that is a coalition of patient, provider, and life sciences stakeholders that advocates for rare disease access.

[Rare Access Action Project @AccessRare]

RAAP urges @GavinNewsom to sign AB 1887 and protect timely access to FDA-approved treatments for Californians living with rare diseases.

Read our letter: https://t.co/rUFc6gU1Dr

[Rare Access Action Project @AccessRare]

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: https://t.co/PqEGQFgxyp

[Rare Access Action Project @AccessRare]

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: https://t.co/4vBduCEGCM

[Rare Access Action Project @AccessRare]

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. https://t.co/9mEH6ueDUD

[Rare Access Action Project @AccessRare]

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: https://t.co/chhnrZehzD

[Rare Access Action Project @AccessRare]

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. https://t.co/J6N2k7IjHR

#raredisease #PDAB

[Rare Access Action Project @AccessRare]

@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.
https://t.co/Or0e11eaYj

#RareDisease #OrphanDrugs #Patientaccess

[Rare Access Action Project @AccessRare]

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. https://t.co/K9GQsWU43b #Raredisease

[Rare Access Action Project @AccessRare]

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: https://t.co/03WNWvaYoP @SteveDaines @SenatorTester

[Patient Worthy @PatientWorthy]

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

[Rare Access Action Project @AccessRare]

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 https://t.co/LlXmpoFboU #RareDiseases #RareDiseaseDay #healthcare

[Rare Disease Day @rarediseaseday]

🎉 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: https://t.co/93MyugM5Zx

[Patient Worthy @PatientWorthy]

Living with and Raising Awareness of Stickler Syndrome: Emily’s Story (Pt. 1) https://t.co/oAPOUR7DcE #RareDisease #SticklerSyndrome #Sticklers

[Rare Access Action Project @AccessRare]

RAAP Set to Fight @macpacgov Efforts to Restrict Access to Rare Medicines in Medicaid https://t.co/Tbvx25xcXn
#orphandrugs #raredisease

[Rare Access Action Project @AccessRare]

Today we celebrate the 40th anniversary of the Orphan Drug Act. @AccessRare is launching a celebration of the anniversary of the #OrphanDrugAct by looking back at the therapies & communities impacted by #FDA approvals. https://t.co/LlXmpoFboU #orphandrugs #rarediseasecommunity

[Rare Access Action Project @AccessRare]

Join the @AccessRare for our 3rd #AnnualConference sponsored by @biogen! On November 10, we will analyze the results of the November elections and dive into #raredisease State and Federal level policies and their impact on patient access. Register now at https://t.co/lzYXZXJ2oS