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Reported covered position: Professional Staff Member-House Foreign Affairs Committee; Sr. Policy Advisor-Rep. Eliot L. Engel; Health Policy Advisor-Rep. Elijah E. Cummings; Legislative Assistant- Rep. Charles A. Wilson; Legislative Correspondent-Senator John D. Rockefeller IV
How to read the money
Income and expense are whole-filing amounts associated with this lobbyist, not personal compensation or an allocated share.
No topic inference: each bill number appears in source LDA issue text assigned to this lobbyist.
Cameron’s Law
Client: NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD) · Firm: NATIONAL ORGANIZATION FOR RARE DISORDERS, INC. (NORD)
Pharmaceutical issues impacting patients with rare diseases. Orphan Drug Act. Prescription Drug User Fee Act (PDUFA) Reauthorization. User Fee Agreements. RARE Act. Inflation Reduction Act Implementation. PRV Reauthorization. Accelerated Approval. S.705: Innovation in Pediatric Drugs Act of 2025. H.R.1414: Camerons Law. Promising Pathways Act 2.0.
Innovation in Pediatric Drugs Act of 2025
Client: NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD) · Firm: NATIONAL ORGANIZATION FOR RARE DISORDERS, INC. (NORD)
Specific issues are shown only where the LDA source assigned them to this lobbyist. Targets apply to the associated filing.
NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD) via NATIONAL ORGANIZATION FOR RARE DISORDERS, INC. (NORD)
2025 · first_quarter · Q1
Rare Disease Initiatives. Affordable Care Act (ACA) Issues and Enhancements. Telehealth. Priority Review Voucher Reauthorization. Accelerated Approval. Newborn Screening.
Medicare / Medicaid issues impacting patients with rare diseases. Inflation Reduction Act Implementation.
Source: Senate LDA
Pharmaceutical issues impacting patients with rare diseases. Orphan Drug Act. Prescription Drug User Fee Act (PDUFA) Reauthorization. User Fee Agreements. RARE Act. Inflation Reduction Act Implementation. PRV Reauthorization. Accelerated Approval. S.705: Innovation in Pediatric Drugs Act of 2025. H.R.1414: Camerons Law. Promising Pathways Act 2.0.
PASTEUR Act
Client: NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD) · Firm: NATIONAL ORGANIZATION FOR RARE DISORDERS, INC. (NORD)
Rare Disease Initiatives. Affordable Care Act (ACA) Issues and Enhancements. H.R.6892: Medical Nutrition Equity Act of 2023. H.R.2940/S.1355: PASTEUR Act. March-in Rights.
Promising Pathway Act
Client: NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD) · Firm: NATIONAL ORGANIZATION FOR RARE DISORDERS, INC. (NORD)
Pharmaceutical issues impacting patients with rare diseases. Orphan Drug Act. H.R.7383/S.1214: RARE Act. Inflation Reduction Act Implementation. H.R.4408/S.1906: Promising Pathway Act (PPA). Lab-developed tests (LDTs) and genetic testing access. PRV Reauthorization.
Promising Pathway Act
Client: NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD) · Firm: NATIONAL ORGANIZATION FOR RARE DISORDERS, INC. (NORD)
Rare Disease Initiatives. Telehealth. Priority Review Voucher Reauthorization. H.R.4408/S.1906: Promising Pathway Act (PPA).
Accelerating Kids’ Access to Care Act
Client: NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD) · Firm: NATIONAL ORGANIZATION FOR RARE DISORDERS, INC. (NORD)
Medicare / Medicaid issues impacting patients with rare diseases. H.R.4758/S.2372: Accelerating Kids Access to Care Act. Inflation Reduction Act Implementation.
Accelerating Kids’ Access to Care Act
Client: NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD) · Firm: NATIONAL ORGANIZATION FOR RARE DISORDERS, INC. (NORD)
Rare Disease Initiatives. Affordable Care Act (ACA) Issues and Enhancements. Telehealth. Priority Review Voucher Reauthorization. Lab-developed tests. H.R.4758/S.2372: Accelerating Kids Access to Care Act.
Medical Nutrition Equity Act of 2023
Client: NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD) · Firm: NATIONAL ORGANIZATION FOR RARE DISORDERS, INC. (NORD)
Rare Disease Initiatives. Newborn Screening. Affordable Care Act (ACA) Issues and Enhancements. Step Therapy. Telehealth. Priority Review Voucher Reauthorization. H.R.6892: Medical Nutrition Equity Act of 2023.
Medical Nutrition Equity Act of 2023
Client: NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD) · Firm: NATIONAL ORGANIZATION FOR RARE DISORDERS, INC. (NORD)
Rare Disease Initiatives. Affordable Care Act (ACA) Issues and Enhancements. H.R.6892: Medical Nutrition Equity Act of 2023. H.R.2940/S.1355: PASTEUR Act. March-in Rights.
RARE Act
Client: NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD) · Firm: NATIONAL ORGANIZATION FOR RARE DISORDERS, INC. (NORD)
Pharmaceutical issues impacting patients with rare diseases. Orphan Drug Act. H.R.7383/S.1214: RARE Act. Inflation Reduction Act Implementation. H.R.4408/S.1906: Promising Pathway Act (PPA). Lab-developed tests (LDTs) and genetic testing access. PRV Reauthorization.
RARE Act
Client: NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD) · Firm: NATIONAL ORGANIZATION FOR RARE DISORDERS, INC. (NORD)
Pharmaceutical issues impacting patients with rare diseases. Orphan Drug Act. H.R.7383/S.1214: RARE Act. Inflation Reduction Act Implementation. PRV Reauthorization. Lab-developed tests.
RARE Act
Client: NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD) · Firm: NATIONAL ORGANIZATION FOR RARE DISORDERS, INC. (NORD)
Pharmaceutical issues impacting patients with rare diseases. Orphan Drug Act. Prescription Drug User Fee Act (PDUFA) Reauthorization. H.R.7383/S.1214: RARE Act. Inflation Reduction Act Implementation. Rare Pediatric Disease Priority Review Vouchers (RDP-PRV). Pediatric Study Requirements. Promising Pathway Act (PPA). Lab-developed tests (LDTs) and genetic testing access.
RARE Act
Client: NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD) · Firm: NATIONAL ORGANIZATION FOR RARE DISORDERS, INC. (NORD)
Pharmaceutical issues impacting patients with rare diseases. Orphan Drug Act. H.R.7383/S.1214: RARE Act. Inflation Reduction Act Implementation. PRV Reauthorization. Lab-developed tests.
RARE Act
Client: NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD) · Firm: NATIONAL ORGANIZATION FOR RARE DISORDERS, INC. (NORD)
Pharmaceutical issues impacting patients with rare diseases. Orphan Drug Act. H.R.7383/S.1214: RARE Act. Inflation Reduction Act Implementation. H.R.4408/S.1906: Promising Pathway Act (PPA). Lab-developed tests (LDTs) and genetic testing access. PRV Reauthorization.
RARE Act
Client: NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD) · Firm: NATIONAL ORGANIZATION FOR RARE DISORDERS, INC. (NORD)
Pharmaceutical issues impacting patients with rare diseases. Orphan Drug Act. Prescription Drug User Fee Act (PDUFA) Reauthorization. H.R.7383/S.1214: RARE Act. Inflation Reduction Act Implementation. Rare Pediatric Disease Priority Review Vouchers (RDP-PRV). Pediatric Study Requirements. Promising Pathway Act (PPA). Lab-developed tests (LDTs) and genetic testing access.
PASTEUR Act of 2023
Client: NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD) · Firm: NATIONAL ORGANIZATION FOR RARE DISORDERS, INC. (NORD)
Rare Disease Initiatives. Affordable Care Act (ACA) Issues and Enhancements. H.R.6892: Medical Nutrition Equity Act of 2023. H.R.2940/S.1355: PASTEUR Act. March-in Rights.
Promising Pathway Act
Client: NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD) · Firm: NATIONAL ORGANIZATION FOR RARE DISORDERS, INC. (NORD)
Rare Disease Initiatives. Telehealth. Priority Review Voucher Reauthorization. H.R.4408/S.1906: Promising Pathway Act (PPA).
Promising Pathway Act
Client: NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD) · Firm: NATIONAL ORGANIZATION FOR RARE DISORDERS, INC. (NORD)
Pharmaceutical issues impacting patients with rare diseases. Orphan Drug Act. H.R.7383/S.1214: RARE Act. Inflation Reduction Act Implementation. H.R.4408/S.1906: Promising Pathway Act (PPA). Lab-developed tests (LDTs) and genetic testing access. PRV Reauthorization.
Accelerating Kids’ Access to Care Act
Client: NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD) · Firm: NATIONAL ORGANIZATION FOR RARE DISORDERS, INC. (NORD)
Medicare / Medicaid issues impacting patients with rare diseases. H.R.4758/S.2372: Accelerating Kids Access to Care Act. Inflation Reduction Act Implementation.
Accelerating Kids’ Access to Care Act
Client: NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD) · Firm: NATIONAL ORGANIZATION FOR RARE DISORDERS, INC. (NORD)
Rare Disease Initiatives. Affordable Care Act (ACA) Issues and Enhancements. Telehealth. Priority Review Voucher Reauthorization. Lab-developed tests. H.R.4758/S.2372: Accelerating Kids Access to Care Act.
RARE Act
Client: NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD) · Firm: NATIONAL ORGANIZATION FOR RARE DISORDERS, INC. (NORD)
Pharmaceutical issues impacting patients with rare diseases. Orphan Drug Act. Prescription Drug User Fee Act (PDUFA) Reauthorization. User Fee Agreements. S.1214: RARE Act. Inflation Reduction Act Implementation. Pediatric Review Vouchers.
RARE Act
Client: NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD) · Firm: NATIONAL ORGANIZATION FOR RARE DISORDERS, INC. (NORD)
Pharmaceutical issues impacting patients with rare diseases. Orphan Drug Act. Prescription Drug User Fee Act (PDUFA) Reauthorization. S.1214 - RARE Act. Inflation Reduction Act Implementation.
Accelerating Kids’ Access to Care Act
Client: NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD) · Firm: NATIONAL ORGANIZATION FOR RARE DISORDERS, INC. (NORD)
Medicare / Medicaid issues impacting patients with rare diseases. H.R.3089/S.1544: Accelerating Kids Access to Care Act. Inflation Reduction Act Implementation.
Inflation Reduction Act of 2022
Client: NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD) · Firm: NATIONAL ORGANIZATION FOR RARE DISORDERS, INC. (NORD)
Rare disease initiatives. Newborn screening. Genetic testing. Affordable Care Act (ACA) Issues and Enhancements as it Relates to H.R.5376 - Build Back Better Act. Telehealth legislation.
Inflation Reduction Act of 2022
Client: NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD) · Firm: NATIONAL ORGANIZATION FOR RARE DISORDERS, INC. (NORD)
Rare disease initiatives. Newborn screening. Genetic testing. Affordable Care Act (ACA) Issues and Enhancements as it Relates to H.R.5376 - Build Back Better Act. Telehealth legislation.
Accelerating Kids’ Access to Care Act
Client: NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD) · Firm: NATIONAL ORGANIZATION FOR RARE DISORDERS, INC. (NORD)
Medicare / Medicaid issues impacting patients with rare diseases. H.R.3089/S.1544: Accelerating Kids Access to Care Act. Inflation Reduction Act Implementation.
Fairness in Orphan Drug Exclusivity Act
Client: NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD) · Firm: NATIONAL ORGANIZATION FOR RARE DISORDERS, INC. (NORD)
Pharmaceutical issues impacting patients with rare diseases. Drug Pricing and Orphan Drug Act. Accelerated Approval Pathway. Orphan Drug Tax Credit. H.R.1629 - Fairness in Orphan Drug Exclusivity Act. Cures 2.0.
Inflation Reduction Act of 2022
Client: NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD) · Firm: NATIONAL ORGANIZATION FOR RARE DISORDERS, INC. (NORD)
Rare disease initiatives. Newborn screening. Affordable Care Act (ACA) issues and enhancements as it relates to H.R.5376 - Build Back Better Act. Paid Medical and Family Leave as it relates to H.R.5376 - Build Back Better Act. Cares 2.0.
Inflation Reduction Act of 2022
Client: NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD) · Firm: NATIONAL ORGANIZATION FOR RARE DISORDERS, INC. (NORD)
Medicare / Medicaid issues impacting patients with rare diseases. Medicare Part D Program as it relates to H.R.5376 - Build Back Better Act.
Safe Step Act
Client: NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD) · Firm: NATIONAL ORGANIZATION FOR RARE DISORDERS, INC. (NORD)
Health issues impacting patients with rare diseases. Rare disease initiatives. Telehealth. Step Therapy. H.R.2279/S.2546: Safe Step Act. Newborn screening. Genetic testing. Health equity. Affordable Care Act (ACA) issues. Affordable Care Act (ACA) enhancements. Drug Pricing and Orphan Drug Act. COVID-19 Related Issues. Medical Nutrition.
Safe Step Act
Client: NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD) · Firm: NATIONAL ORGANIZATION FOR RARE DISORDERS, INC. (NORD)
Health issues impacting patients with rare diseases. Rare disease initiatives. Telehealth. Step Therapy. H.R.2279/S.2546: Safe Step Act. Clinical trials. Newborn screening. User Fee Negotiations. Value Based Purchasing. Affordable Care Act (ACA) issues. Affordable Care Act (ACA) enhancements. COVID-19 Related Issues.
Safe Step Act
Client: NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD) · Firm: NATIONAL ORGANIZATION FOR RARE DISORDERS, INC. (NORD)
Health issues impacting patients with rare diseases. Rare disease initiatives. Telehealth. Step Therapy. H.R.2279/S.2546: Safe Step Act. Clinical trials. Newborn screening. User Fee Negotiations. Value Based Purchasing. Affordable Care Act (ACA) issues. Affordable Care Act (ACA) enhancements. COVID-19 Related Issues.
Safe Step Act
Client: NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD) · Firm: NATIONAL ORGANIZATION FOR RARE DISORDERS, INC. (NORD)
Health issues impacting patients with rare diseases. Rare disease initiatives. Telehealth. Step Therapy. H.R.2279/S.2546: Safe Step Act. Newborn screening. Genetic testing. Health equity. Affordable Care Act (ACA) issues. Affordable Care Act (ACA) enhancements. Drug Pricing and Orphan Drug Act. COVID-19 Related Issues. Medical Nutrition.
Safe Step Act
Client: NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD) · Firm: NATIONAL ORGANIZATION FOR RARE DISORDERS, INC. (NORD)
Health issues impacting patients with rare diseases. Telehealth. Medical Foods. Step Therapy. H.R.2279/S.2546: Safe Step Act. Surprise Medical Billing. Physician Fee Schedule. Value Based Purchasing. Grandfathered Plans - Affordable Care Act. COVID-19 Related Issues. Implementation of H.R.748/S.3548: Coronavirus Aid, Relief, and Economic Security Act (CARES) Act.
Safe Step Act
Client: NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD) · Firm: NATIONAL ORGANIZATION FOR RARE DISORDERS, INC. (NORD)
Health issues impacting patients with rare diseases. Telehealth. Step Therapy. H.R.2279/S.2546: Safe Step Act. Notice of Benefit Payment Parameters. Surprise Medical Billing. Pre-Existing Conditions. User Fee Negotiations. Physician Fee Schedule. Value Based Purchasing. Integrated Review Panel. Regulation and Guidance Reform. Affordable Care Act. COVID-19 Related Issues.
CARES Act
Client: NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD) · Firm: NATIONAL ORGANIZATION FOR RARE DISORDERS, INC. (NORD)
Health issues impacting patients with rare diseases. Telehealth. Medical Foods. Step Therapy. H.R.2279/S.2546: Safe Step Act. Surprise Medical Billing. Physician Fee Schedule. Value Based Purchasing. Grandfathered Plans - Affordable Care Act. COVID-19 Related Issues. Implementation of H.R.748/S.3548: Coronavirus Aid, Relief, and Economic Security Act (CARES) Act.
CARES Act
Client: NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD) · Firm: NATIONAL ORGANIZATION FOR RARE DISORDERS, INC. (NORD)
Health issues impacting patients with rare diseases. International Classification of Diseases (ICD-10). FDA Clinical Trials Step Therapy. Gene Therapy. Biosimilars. Medical Foods. Public Law No: 111-148: The Patient Protection and Affordable Care Act. HHS/OCR Anti discrimination. Health Care Access Affordability. Surprise Medical Billing. Value Based Purchasing. Paid Leave. COVID-19 Related Issues. COVID-19 Related Home Infusion Issues. Implementation of H.R.748/S.3548: Coronavirus Aid, Relief, and Economic Security Act (CARES) Act.
Safe Step Act
Client: NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD) · Firm: NATIONAL ORGANIZATION FOR RARE DISORDERS, INC. (NORD)
Health issues impacting patients with rare diseases. Telehealth. Medical Foods. Step Therapy. H.R.2279/S.2546: Safe Step Act. Surprise Medical Billing. Physician Fee Schedule. Value Based Purchasing. Grandfathered Plans - Affordable Care Act. COVID-19 Related Issues. Implementation of H.R.748/S.3548: Coronavirus Aid, Relief, and Economic Security Act (CARES) Act.
Safe Step Act
Client: NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD) · Firm: NATIONAL ORGANIZATION FOR RARE DISORDERS, INC. (NORD)
Health issues impacting patients with rare diseases. Telehealth. Step Therapy. H.R.2279/S.2546: Safe Step Act. Notice of Benefit Payment Parameters. Surprise Medical Billing. Pre-Existing Conditions. User Fee Negotiations. Physician Fee Schedule. Value Based Purchasing. Integrated Review Panel. Regulation and Guidance Reform. Affordable Care Act. COVID-19 Related Issues.
CARES Act
Client: NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD) · Firm: NATIONAL ORGANIZATION FOR RARE DISORDERS, INC. (NORD)
Health issues impacting patients with rare diseases. Telehealth. Medical Foods. Step Therapy. H.R.2279/S.2546: Safe Step Act. Surprise Medical Billing. Physician Fee Schedule. Value Based Purchasing. Grandfathered Plans - Affordable Care Act. COVID-19 Related Issues. Implementation of H.R.748/S.3548: Coronavirus Aid, Relief, and Economic Security Act (CARES) Act.
CARES Act
Client: NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD) · Firm: NATIONAL ORGANIZATION FOR RARE DISORDERS, INC. (NORD)
Health issues impacting patients with rare diseases. International Classification of Diseases (ICD-10). FDA Clinical Trials Step Therapy. Gene Therapy. Biosimilars. Medical Foods. Public Law No: 111-148: The Patient Protection and Affordable Care Act. HHS/OCR Anti discrimination. Health Care Access Affordability. Surprise Medical Billing. Value Based Purchasing. Paid Leave. COVID-19 Related Issues. COVID-19 Related Home Infusion Issues. Implementation of H.R.748/S.3548: Coronavirus Aid, Relief, and Economic Security Act (CARES) Act.
Pharmaceutical issues impacting patients with rare diseases. Orphan Drug Act. Prescription Drug User Fee Act (PDUFA) Reauthorization. User Fee Agreements. RARE Act. Inflation Reduction Act Implementation. PRV Reauthorization. Accelerated Approval. S.705: Innovation in Pediatric Drugs Act of 2025. H.R.1414: Camerons Law. Promising Pathways Act 2.0.
Appropriations impacting patients with rare diseases. National Institutes of Health (NIH) NCATS Appropriations.
Filing targets: Centers For Medicare and Medicaid Services (CMS), Food & Drug Administration (FDA), HOUSE OF REPRESENTATIVES, Health & Human Services, Dept of (HHS), SENATE
NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD) via NATIONAL ORGANIZATION FOR RARE DISORDERS, INC. (NORD)
2024 · fourth_quarter · Q4
Pharmaceutical issues impacting patients with rare diseases. Orphan Drug Act. Inflation Reduction Act Implementation. PRV Reauthorization.
Medicare / Medicaid issues impacting patients with rare diseases. Inflation Reduction Act Implementation.
Rare Disease Initiatives. Affordable Care Act (ACA) Issues and Enhancements. Telehealth. Priority Review Voucher Reauthorization. Lab-developed tests. H.R.4758/S.2372: Accelerating Kids Access to Care Act.
Filing targets: Centers For Medicare and Medicaid Services (CMS), HOUSE OF REPRESENTATIVES, SENATE
NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD) via NATIONAL ORGANIZATION FOR RARE DISORDERS, INC. (NORD)
2024 · third_quarter · Q3
Pharmaceutical issues impacting patients with rare diseases. Orphan Drug Act. H.R.7383/S.1214: RARE Act. Inflation Reduction Act Implementation. PRV Reauthorization. Lab-developed tests.
Medicare / Medicaid issues impacting patients with rare diseases. Inflation Reduction Act Implementation.
Rare Disease Initiatives. Newborn Screening. Affordable Care Act (ACA) Issues and Enhancements. Step Therapy. Telehealth. Priority Review Voucher Reauthorization. H.R.6892: Medical Nutrition Equity Act of 2023.
Filing targets: Centers For Medicare and Medicaid Services (CMS), Food & Drug Administration (FDA), HOUSE OF REPRESENTATIVES, Health & Human Services, Dept of (HHS), Natl Institutes of Health (NIH), SENATE
NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD) via NATIONAL ORGANIZATION FOR RARE DISORDERS, INC. (NORD)
2024 · second_quarter · Q2
Rare Disease Initiatives. Telehealth. Priority Review Voucher Reauthorization. H.R.4408/S.1906: Promising Pathway Act (PPA).
Pharmaceutical issues impacting patients with rare diseases. Orphan Drug Act. H.R.7383/S.1214: RARE Act. Inflation Reduction Act Implementation. H.R.4408/S.1906: Promising Pathway Act (PPA). Lab-developed tests (LDTs) and genetic testing access. PRV Reauthorization.
Medicare / Medicaid issues impacting patients with rare diseases. H.R.4758/S.2372: Accelerating Kids Access to Care Act. Inflation Reduction Act Implementation.
Filing targets: Centers For Medicare and Medicaid Services (CMS), Food & Drug Administration (FDA), HOUSE OF REPRESENTATIVES, Natl Institutes of Health (NIH), SENATE
NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD) via NATIONAL ORGANIZATION FOR RARE DISORDERS, INC. (NORD)
2024 · first_quarter · Q1
Rare Disease Initiatives. Affordable Care Act (ACA) Issues and Enhancements. H.R.6892: Medical Nutrition Equity Act of 2023. H.R.2940/S.1355: PASTEUR Act. March-in Rights.
Pharmaceutical issues impacting patients with rare diseases. Orphan Drug Act. Prescription Drug User Fee Act (PDUFA) Reauthorization. H.R.7383/S.1214: RARE Act. Inflation Reduction Act Implementation. Rare Pediatric Disease Priority Review Vouchers (RDP-PRV). Pediatric Study Requirements. Promising Pathway Act (PPA). Lab-developed tests (LDTs) and genetic testing access.
Medicare / Medicaid issues impacting patients with rare diseases. Inflation Reduction Act Implementation.
Filing targets: Centers For Medicare and Medicaid Services (CMS), Food & Drug Administration (FDA), HOUSE OF REPRESENTATIVES, Health & Human Services, Dept of (HHS), Natl Institute of Standards & Technology (NIST), SENATE
NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD) via NATIONAL ORGANIZATION FOR RARE DISORDERS, INC. (NORD)
2023 · fourth_quarter · Q4
Pharmaceutical issues impacting patients with rare diseases. Orphan Drug Act. Prescription Drug User Fee Act (PDUFA) Reauthorization. User Fee Agreements. S.1214: RARE Act. Inflation Reduction Act Implementation. Pediatric Review Vouchers.
Medicare / Medicaid issues impacting patients with rare diseases. Inflation Reduction Act Implementation.
Filing targets: Centers For Medicare and Medicaid Services (CMS), Food & Drug Administration (FDA), HOUSE OF REPRESENTATIVES, Health & Human Services, Dept of (HHS), SENATE
NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD) via NATIONAL ORGANIZATION FOR RARE DISORDERS, INC. (NORD)
2023 · third_quarter · Q3
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. S.1214 - RARE Act. Inflation Reduction Act Implementation.
Filing targets: Centers For Medicare and Medicaid Services (CMS), Food & Drug Administration (FDA), HOUSE OF REPRESENTATIVES, SENATE
NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD) via NATIONAL ORGANIZATION FOR RARE DISORDERS, INC. (NORD)
2023 · second_quarter · Q2
Medicare / Medicaid issues impacting patients with rare diseases. Inflation Reduction Act Implementation.
Pharmaceutical issues impacting patients with rare diseases. Orphan Drug Act. Inflation Reduction Act Implementation.
Filing targets: Centers For Medicare and Medicaid Services (CMS), Food & Drug Administration (FDA), HOUSE OF REPRESENTATIVES, Health & Human Services, Dept of (HHS), SENATE
NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD) via NATIONAL ORGANIZATION FOR RARE DISORDERS, INC. (NORD)
2023 · first_quarter · Q1
Appropriations impacting patients with rare diseases. National Institute of Health (NIH) NCATS Appropriations. Advanced Research Projects Agency-Health (ARPA-H) Appropriations.
Rare Disease Initiatives. Newborn Screening. Genetic Testing Access. Affordable Care Act (ACA) Issues and Enhancements. Telehealth.
Pharmaceutical issues impacting patients with rare diseases. Orphan Drug Act. Prescription Drug User Fee Act (PDUFA) Reauthorization. User Fee Agreements. Inflation Reduction Act Implementation.
NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD) via NATIONAL ORGANIZATION FOR RARE DISORDERS, INC. (NORD)
2022 · fourth_quarter · Q4
Rare disease initiatives. Newborn Screening. Genetic Testing Access. Medical Nutrition. Affordable Care Act (ACA) Issues and Enhancements.
Medicare / Medicaid issues impacting patients with rare diseases. H.R.3089/S.1544: Accelerating Kids Access to Care Act. Inflation Reduction Act Implementation.
Pharmaceutical issues impacting patients with rare diseases. Orphan Drug Act. Rare Disease Trial Design. Prescription Drug User Fee Act (PDUFA) Reauthorization. User Fee Agreements. Inflation Reduction Act Implementation. NIH Translation Science Issues.
NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD) via NATIONAL ORGANIZATION FOR RARE DISORDERS, INC. (NORD)
2022 · third_quarter · Q3
Medicare / Medicaid issues impacting patients with rare diseases.
Pharmaceutical issues impacting patients with rare diseases. Orphan Drug Act. Rare Disease Trial Design. Prescription Drug User Fee Act (PDUFA) Reauthorization. User Fee Agreements. Clinical Trial Diversity. Patient-focused drug development.
Filing targets: Centers For Medicare and Medicaid Services (CMS), Food & Drug Administration (FDA), HOUSE OF REPRESENTATIVES, Health & Human Services, Dept of (HHS), Natl Institutes of Health (NIH), SENATE
NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD) via NATIONAL ORGANIZATION FOR RARE DISORDERS, INC. (NORD)
2022 · second_quarter · Q2
Pharmaceutical issues impacting patients with rare diseases. Orphan Drug Act. User Fee Agreements. Prescription Drug User Fee Act (PDUFA) Reauthorization.
Medicare / Medicaid issues impacting patients with rare diseases.
Rare disease initiatives. Newborn screening. Affordable Care Act (ACA) Issues and Enhancements.
Filing targets: Centers For Medicare and Medicaid Services (CMS), HOUSE OF REPRESENTATIVES, Health & Human Services, Dept of (HHS), SENATE
NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD) via NATIONAL ORGANIZATION FOR RARE DISORDERS, INC. (NORD)
2022 · first_quarter · 1A
Rare disease initiatives. Newborn screening. Genetic testing. Affordable Care Act (ACA) Issues and Enhancements as it Relates to H.R.5376 - Build Back Better Act. Telehealth legislation.
Pharmaceutical issues impacting patients with rare diseases. Orphan Drug Act. User Fee Agreements. Prescription Drug User Fee Act (PDUFA).
Medicare / Medicaid issues impacting patients with rare diseases.
NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD) via NATIONAL ORGANIZATION FOR RARE DISORDERS, INC. (NORD)
2022 · first_quarter · Q1
Rare disease initiatives. Newborn screening. Genetic testing. Affordable Care Act (ACA) Issues and Enhancements as it Relates to H.R.5376 - Build Back Better Act. Telehealth legislation.
Medicare / Medicaid issues impacting patients with rare diseases.
Pharmaceutical issues impacting patients with rare diseases. Orphan Drug Act. User Fee Agreements. Prescription Drug User Fee Act (PDUFA).
NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD) via NATIONAL ORGANIZATION FOR RARE DISORDERS, INC. (NORD)
2021 · fourth_quarter · Q4
Pharmaceutical issues impacting patients with rare diseases. Orphan Drug Act.
Orphan Drug Tax Credit Issues.
Medicare / Medicaid issues impacting patients with rare diseases. Medicare Part D Program as it relates to H.R.5376 - Build Back Better Act.
NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD) via NATIONAL ORGANIZATION FOR RARE DISORDERS, INC. (NORD)
2021 · third_quarter · Q3
Pharmaceutical issues impacting patients with rare diseases. Drug Pricing and Orphan Drug Act. Accelerated Approval Pathway. Orphan Drug Tax Credit. H.R.1629 - Fairness in Orphan Drug Exclusivity Act. Cures 2.0.
Health issues impacting patients with rare diseases. Rare disease initiatives. Telehealth. Step Therapy. User Fee Negotiations. Newborn screening. Affordable Care Act (ACA) issues. Affordable Care Act (ACA) enhancements. COVID-19 Related Issues. Medical Nutrition. Paid Medical and Family Leave
Medicare / Medicaid issues impacting patients with rare diseases. Medicare Part D Program. Prescription Drug Pricing. Accelerated Approval. Medicare issues related to medical nutrition.
NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD) via NATIONAL ORGANIZATION FOR RARE DISORDERS, INC. (NORD)
2021 · second_quarter · Q2
Medicare / Medicaid issues impacting patients with rare diseases. Medicare Part D Program. Section 1115 Medicaid Waivers. Medicaid Drug Rebates. Prescription Drug Pricing.
Health issues impacting patients with rare diseases. Rare disease initiatives. Telehealth. Step Therapy. H.R.2279/S.2546: Safe Step Act. Newborn screening. Genetic testing. Health equity. Affordable Care Act (ACA) issues. Affordable Care Act (ACA) enhancements. Drug Pricing and Orphan Drug Act. COVID-19 Related Issues. Medical Nutrition.
Filing targets: Centers For Medicare and Medicaid Services (CMS), HOUSE OF REPRESENTATIVES, Health & Human Services, Dept of (HHS), SENATE
NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD) via NATIONAL ORGANIZATION FOR RARE DISORDERS, INC. (NORD)
2021 · first_quarter · Q1
Health issues impacting patients with rare diseases. Rare disease initiatives. Telehealth. Step Therapy. H.R.2279/S.2546: Safe Step Act. Clinical trials. Newborn screening. User Fee Negotiations. Value Based Purchasing. Affordable Care Act (ACA) issues. Affordable Care Act (ACA) enhancements. COVID-19 Related Issues.
Public Health Agency Appropriations.
Filing targets: Centers For Disease Control & Prevention (CDC), Centers For Medicare and Medicaid Services (CMS), Food & Drug Administration (FDA), HOUSE OF REPRESENTATIVES, Health & Human Services, Dept of (HHS), Natl Institutes of Health (NIH), SENATE
NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD) via NATIONAL ORGANIZATION FOR RARE DISORDERS, INC. (NORD)
2020 · fourth_quarter · Q4
Public Health Agency Appropriations.
Health issues impacting patients with rare diseases. Telehealth. Step Therapy. H.R.2279/S.2546: Safe Step Act. Notice of Benefit Payment Parameters. Surprise Medical Billing. Pre-Existing Conditions. User Fee Negotiations. Physician Fee Schedule. Value Based Purchasing. Integrated Review Panel. Regulation and Guidance Reform. Affordable Care Act. COVID-19 Related Issues.
Pharmaceutical issues impacting patients with rare diseases. Prescription Drug Pricing. NBPP Proposed Rule. Biosimilar User Fee Act (BsUFA). Prescription Drug User Fee Act (PDUFA).
NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD) via NATIONAL ORGANIZATION FOR RARE DISORDERS, INC. (NORD)
2020 · third_quarter · Q3
Health issues impacting patients with rare diseases. Telehealth. Medical Foods. Step Therapy. H.R.2279/S.2546: Safe Step Act. Surprise Medical Billing. Physician Fee Schedule. Value Based Purchasing. Grandfathered Plans - Affordable Care Act. COVID-19 Related Issues. Implementation of H.R.748/S.3548: Coronavirus Aid, Relief, and Economic Security Act (CARES) Act.
Medicare issues impacting patients with rare diseases. Medicaid issues impacting patients with rare diseases. COVID-19 Relief. Medicare Part D Program. Section 1115 Medicaid Waivers. Medicaid Drug Rebates. Medicaid Expansion. Value-Based Payments. Pass-Through Payments.
NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD) via NATIONAL ORGANIZATION FOR RARE DISORDERS, INC. (NORD)
2020 · second_quarter · Q2
Health issues impacting patients with rare diseases. International Classification of Diseases (ICD-10). FDA Clinical Trials Step Therapy. Gene Therapy. Biosimilars. Medical Foods. Public Law No: 111-148: The Patient Protection and Affordable Care Act. HHS/OCR Anti discrimination. Health Care Access Affordability. Surprise Medical Billing. Value Based Purchasing. Paid Leave. COVID-19 Related Issues. COVID-19 Related Home Infusion Issues. Implementation of H.R.748/S.3548: Coronavirus Aid, Relief, and Economic Security Act (CARES) Act.
Pharmaceutical issues impacting patients with rare diseases. Orphan Drug Act. Drug Pricing. Pediatric Priority Review Vouchers.
Medicare / Medicaid issues impacting patients with rare diseases. Inflation Reduction Act Implementation.
Filing targets: Centers For Medicare and Medicaid Services (CMS), Food & Drug Administration (FDA), HOUSE OF REPRESENTATIVES, Health & Human Services, Dept of (HHS), Natl Institutes of Health (NIH), SENATE
Filing targets: Centers For Medicare and Medicaid Services (CMS), Food & Drug Administration (FDA), HOUSE OF REPRESENTATIVES, Health & Human Services, Dept of (HHS), SENATE
Orphan Drug Tax Credit Issues.
Filing targets: Centers For Medicare and Medicaid Services (CMS), HOUSE OF REPRESENTATIVES, Health & Human Services, Dept of (HHS), SENATE
Orphan Drug Tax Credit Issues.
Filing targets: Centers For Medicare and Medicaid Services (CMS), HOUSE OF REPRESENTATIVES, Health & Human Services, Dept of (HHS), SENATE
Rare disease initiatives. Newborn screening. Affordable Care Act (ACA) issues and enhancements as it relates to H.R.5376 - Build Back Better Act. Paid Medical and Family Leave as it relates to H.R.5376 - Build Back Better Act. Cares 2.0.
Filing targets: Centers For Medicare and Medicaid Services (CMS), HOUSE OF REPRESENTATIVES, Health & Human Services, Dept of (HHS), SENATE
Filing targets: HOUSE OF REPRESENTATIVES, Health & Human Services, Dept of (HHS), SENATE
Medicare issues impacting patients with rare diseases. Medicaid issues impacting patients with rare diseases. Medicare Part D Program. Section 1115 Medicaid Waivers. Medicaid Drug Rebates. Medicaid Expansion. Value-Based Payments. Prior Authorization.
Filing targets: Centers For Medicare and Medicaid Services (CMS), Food & Drug Administration (FDA), HOUSE OF REPRESENTATIVES, Health & Human Services, Dept of (HHS), Office of Management & Budget (OMB), SENATE
Pharmaceutical issues impacting patients with rare diseases. Drug Pricing.
Filing targets: Centers For Medicare and Medicaid Services (CMS), HOUSE OF REPRESENTATIVES, Health & Human Services, Dept of (HHS), SENATE
Medicare issues impacting patients with rare diseases. Medicare Part A Program. COVID-19 Relief for Home Infusion Under Medicare Part B. Medicare Part D Program. Medicaid Best Price. Section 1115 Medicaid Waivers. Medicaid Block Grants.
Filing targets: Centers For Disease Control & Prevention (CDC), Centers For Medicare and Medicaid Services (CMS), Food & Drug Administration (FDA), HOUSE OF REPRESENTATIVES, Health & Human Services, Dept of (HHS), Natl Institutes of Health (NIH), SENATE