Literal source text
Lobbying issues and bill citations
HCR · Health Issues
Support for H.R.946, Optimizing Research Progress Hope And New Cures Act (ORPHAN Cures Act). Legislation regarding the Orphan Drug Act and rare disease diagnosis, treatment, and care. Legislation regarding kidney disease and in particular rare kidney disease. Legislation regarding newborn screening. H.R.1518, New Era of Preventing End-Stage Kidney Disease Act. Policies regarding copay accumulators and impact on rare disease patients. Support of reauthorization of priority review voucher program. H.R.1968, Full-Year Continuing Appropriations and Extensions Act, 2025.
Literal federal measure citations: H.R.946, H.R.1518, H.R.1968
MMM · Medicare/Medicaid
Support for H.R.946, Optimizing Research Progress Hope And New Cures Act (ORPHAN Cures Act). Legislation impacting products approved under the Accelerated Approval pathway. H.R.1518, New Era of Preventing End-Stage Kidney Disease Act. Policies regarding copay accumulators and impact on rare disease patients.
Literal federal measure citations: H.R.946, H.R.1518
PHA · Pharmacy
Support for H.R.946, Optimizing Research Progress Hope And New Cures Act (ORPHAN Cures Act). Legislation regarding orphan drug pricing, value, and reimbursement, relative to the Inflation Reduction Act of 2022 (Pub. L. No. 117-169, 136 Stat. 1818 (2022)). Policies regarding copay accumulators and impact on rare disease patients. Support of reauthorization of priority review voucher program. H.R.1968, Full-Year Continuing Appropriations and Extensions Act, 2025.
Literal federal measure citations: H.R.946, H.R.1968
MED · Medical/Disease Research/Clinical Labs
Legislation regarding clinical research for rare diseases and orphan drug development, and the Accelerated Approval pathway. Support of reauthorization of priority review voucher program.
TAX · Taxation/Internal Revenue Code
H.R.1414, Camerons Law, to restore the amount of the Orphan Drug Tax Credit. Legislation to improve education and care pathways for patients with rare kidney disease.
Literal federal measure citations: H.R.1414
