Everything you need to advocate for the PROTECT Rare Act!
Please find below everything you need to advocate for the Providing Realistic Opportunity to Equal and Comparable Treatment “PROTECT Rare Act”, a bipartisan bill that levels the playing field for rare disease patients trying to access medically necessary care.
PROTECT RARE ACT
Feb 29 E&C Hearing minute 2:07 recognizes Dr. Dunn’s remarks on H.R. 6094
Dear Colleague letter from Congresswoman Matsui, inviting her fellow congressional offices to cosponsor the bill.
STAT Opinion Piece by Darcy Krueger and Emanual Maverakis (STAT references the bill’s name in the last Congress. The new bill is the PROTECT Rare Act)
Recording of Expert Panel Discussion on the problems and solutions for rare disease patients (and their doctors) who spend hours with insurance to advocate for medically necessary care. (The panel references the bill’s name in the last Congress. The new bill is the PROTECT Rare Act)
Slide Deck for PROTECT Rare Act
Patient Stories: What happens when a rare disease drug seems to work, but the health care system doesn’t? Read here.