Implementation of FDA Rare Disease Innovation Hub; reauthorization of Pediatric Priority Review Voucher; reauthorization of Newborn Screening Saves Lives Act; Activities related to PDUFA VIII; Concerns about FDA Complete Response Letters and other issues related to rare disease therapies; Activities of Congressional Rare Disease Caucus.
2025 · 4th Quarter (Oct 1 - Dec 31)
EVERYLIFE FOUNDATION FOR RARE DISEASES
Filed by FAEGRE DRINKER BIDDLE & REATH LLP.
Open official filingSource-reported fields
Filing overview
- Type
- 4th Quarter - Report
- Posted
- Jan 19, 2026
- Income
- $20,000.00
- Expenses
- Not reported
- Registrant
- FAEGRE DRINKER BIDDLE & REATH LLP
- Filing UUID
- 88a8dc71-cfc0-4474-9854-d6fa9a688ec5
- Termination date
- Not reported
Literal source text
Lobbying issues and bill citations
FY 26 appropriations programmatic and report provisions pertaining to rare disease policy priorities; H.R. 1, budget reconciliation/One Big, Beautiful Bill Act.
Literal federal measure citations: H.R. 1
Accelerating Kids Access to Care Act (H.R. 1509/S. 752) and related out-of-state Medicaid issues; Medicaid funding and budget reconciliation; H.R. 1, budget reconciliation/One Big, Beautiful Bill Act.
Literal federal measure citations: H.R. 1509, S. 752, H.R. 1
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