Rare Disease Initiatives. Affordable Care Act (ACA) Issues and Enhancements. Priority Review Voucher Reauthorization. Newborn Screening.
2025 · 2nd Quarter (Apr 1 - June 30)
NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD)
Filed by NATIONAL ORGANIZATION FOR RARE DISORDERS, INC. (NORD).
Open official filingSource-reported fields
Filing overview
- Type
- 2nd Quarter - Report
- Posted
- Jul 21, 2025
- Income
- Not reported
- Expenses
- $50,000.00
- Filing UUID
- 29ab9ef1-02ef-4e3a-8117-a07e4250dc50
- Termination date
- Not reported
Expense method: B
Literal source text
Lobbying issues and bill citations
Medicare / Medicaid issues impacting patients with rare diseases. Inflation Reduction Act Implementation.
Pharmaceutical issues impacting patients with rare diseases. Orphan Drug Act. Prescription Drug User Fee Act (PDUFA) Reauthorization. RARE Act. Inflation Reduction Act Implementation. PRV Reauthorization. H.R.1414: Camerons Law. Promising Pathways Act 2.0.
Literal federal measure citations: H.R.1414
Appropriations impacting patients with rare diseases. National Institutes of Health (NIH) NCATS Appropriations. Advanced Research Projects Agency - Health (ARPA-H) Appropriations. NIH / FDA Appropriations. HHS RIFs.
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