URGENT CALL TO ACTION!!
Due to the tremendous momentum created by Rare Disease Week on Capitol Hill, The Speeding Therapy Access Today (STAT) Act will FINALLY be discussed in a Congressional hearing on Thursday, March 17th at 10:30AM EST! This is a MAJOR milestone across all rare disease communities' efforts to pass targeted and impactful policy reforms at the Food and Drug Administration (FDA)!
The STAT Act will:
✓ Improve rare disease coordination, stakeholder engagement, and policy development within FDA by expanding existing authority to create a Rare Disease Center of Excellence,
✓ Inform rare disease policies and actions by creating a Rare Disease and Condition Drug Advisory Committee,
✓ Fund regulatory science and related activities to support development of therapies to treat very small rare disease populations, and
✓ Strengthen rare disease patient access to FDA-approved therapies in both public and commercial plans through enhanced FDA and Centers for Medicare and Medicaid Services coordination, proactive engagement of payers, and specific actions intended to strengthen Medicare and Medicaid beneficiary access to novel therapies.
If you have not already done so, please click here: Support the STAT Act! (p2a.co) or visit the Advocacy tab on our web page at Advocacy & Awareness - Prader-Willi Syndrome Association | USA (pwsausa.org) and ask your members of Congress to co-sponsor the STAT Act today! Increasing the number of STAT Act co-sponsors will help make the case that the STAT Act should advance into the next stages of the legislative process. If you would like to watch the STAT Act (HR 1730) being discussed LIVE in committee on Thursday, March 17th at 10:30AM EST, please click here: Hearing on "The Future of Medicine: Legislation to Encourage Innovation and Improve Oversight" | Democrats, Energy and Commerce Committee (house.gov)