Loading…
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.
To provide that the rule entitled Short-Term, Limited Duration Insurance shall have no force or effect.
Client: NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD) · Firm: NATIONAL ORGANIZATION FOR RARE DISORDERS, INC. (NORD)
Health issues impacting patients with rare diseases. H.R.2279: Safe Step Act. Rare Disease Advancement, Research, and Education Act (Legislation not yet introduced). Advancing Access to Targeted Therapies Act (Legislation not yet introduced). H.Res.242: Affirming the importance of the Orphan Drug Act, celebrating the over 750 new orphan therapies approved since its creation, and recognizing the need to continue supporting research and development for rare diseases. Pediatric subspecialty loan repayment reauthorization. H.R.2507: Newborn Screening Saves Lives Reauthorization Act of 2019. H.R. 776/S.1173: Emergency Medical Services for Children Program Reauthorization Act of 2019. H.R.1379/S.560: Ensuring Lasting Smiles Act. H.R.2862: VACCINES Act of 2019. Copay Accumulator Adjustment Programs (CAAPs). The Patient-Centered Outcomes Research Institute (PCORI) Reauthorization (Legislation not yet introduced). H.R.2501: Medical Nutrition Equity Act. H.R.1010: To provide that the rule entitled "Short-Term, Limited Duration Insurance" shall have no force or effect. H.R.986: Protecting Americans with Preexisting Conditions Act of 2019. H.R.1884: Protecting Pre-Existing Conditions and Making Health Care More Affordable Act of 2019. S.1125: Protect Act. RIN 0938-ZB45: Patient Protection and Affordable Care Act; Increasing Consumer Choice Through the Sale of Individual Health Insurance Coverage Across State Lines Through Health Care Choice Compacts. H.R.1386/S.1905: ENROLL Act of 2019. H.R.2073/S.110: Medical Expense Savings Act. Guidance on Compliance with the Congressional Review Act.
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)
2019 · second_quarter · Q2
Pharmaceutical issues impacting patients with rare diseases. Orphan Drug Act. Orphan Drug Tax Credit. H.R.1332: Fair Care Act of 2019. H.R.2296: FAIR Drug Pricing Act of 2019. H.R.987: Strengthening Health Care and Lowering Prescription Drug Costs Act. S.474: Stopping the Pharmaceutical Industry from Keeping drugs Expensive (SPIKE) Act of 2019. Rebate Rule Comments. FDA Natural History Studies for Drug Development. Docket No. FDA-2015-D-2818: Rare Diseases: Common Issues in Drug Development, Guidance For Industry; Draft Guidance. H.R.965/S.340: CREATES Act of 2019. Prescription Drug User Fee Act (PDUFA) Reauthorization.
Source: Senate LDA
Fair Care Act of 2019
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. Orphan Drug Tax Credit. H.R.1332: Fair Care Act of 2019. FDA-2018-N-4171: Patient Engagement in Medical Device Clinical Trials. Docket No. FDA-2018-D-4455-0001: Developing and Submitting Proposed Draft Guidance Relating to Patient Experience Data; Draft Guidance for Industry and Other Stakeholders. Docket No. FDA-2015-D-2818: Rare Diseases: Common Issues in Drug Development, Guidance For Industry; Draft Guidance. H.R.965/S.340: CREATES Act of 2019. FR Document: 2019-01026 Citation: 84 FR 2340: Removal of Safe Harbor Protection for Rebates Involving Prescription Pharmaceuticals and Creation of New Safe Harbor Protection for Certain Point-of-Sale Reductions in Price on Prescription Pharmaceuticals and Certain Pharmacy Benefit Manager Service Fees.
Fair Care Act of 2019
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. Orphan Drug Tax Credit. H.R.1332: Fair Care Act of 2019. H.R.2296: FAIR Drug Pricing Act of 2019. H.R.987: Strengthening Health Care and Lowering Prescription Drug Costs Act. S.474: Stopping the Pharmaceutical Industry from Keeping drugs Expensive (SPIKE) Act of 2019. Rebate Rule Comments. FDA Natural History Studies for Drug Development. Docket No. FDA-2015-D-2818: Rare Diseases: Common Issues in Drug Development, Guidance For Industry; Draft Guidance. H.R.965/S.340: CREATES Act of 2019. Prescription Drug User Fee Act (PDUFA) Reauthorization.
Ensuring Lasting Smiles Act
Client: NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD) · Firm: NATIONAL ORGANIZATION FOR RARE DISORDERS, INC. (NORD)
Health issues impacting patients with rare diseases. H.R.2279: Safe Step Act. Rare Disease Advancement, Research, and Education Act (Legislation not yet introduced). Advancing Access to Targeted Therapies Act (Legislation not yet introduced). H.Res.242: Affirming the importance of the Orphan Drug Act, celebrating the over 750 new orphan therapies approved since its creation, and recognizing the need to continue supporting research and development for rare diseases. Pediatric subspecialty loan repayment reauthorization. H.R.2507: Newborn Screening Saves Lives Reauthorization Act of 2019. H.R. 776/S.1173: Emergency Medical Services for Children Program Reauthorization Act of 2019. H.R.1379/S.560: Ensuring Lasting Smiles Act. H.R.2862: VACCINES Act of 2019. Copay Accumulator Adjustment Programs (CAAPs). The Patient-Centered Outcomes Research Institute (PCORI) Reauthorization (Legislation not yet introduced). H.R.2501: Medical Nutrition Equity Act. H.R.1010: To provide that the rule entitled "Short-Term, Limited Duration Insurance" shall have no force or effect. H.R.986: Protecting Americans with Preexisting Conditions Act of 2019. H.R.1884: Protecting Pre-Existing Conditions and Making Health Care More Affordable Act of 2019. S.1125: Protect Act. RIN 0938-ZB45: Patient Protection and Affordable Care Act; Increasing Consumer Choice Through the Sale of Individual Health Insurance Coverage Across State Lines Through Health Care Choice Compacts. H.R.1386/S.1905: ENROLL Act of 2019. H.R.2073/S.110: Medical Expense Savings Act. Guidance on Compliance with the Congressional Review Act.
ENROLL Act of 2019
Client: NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD) · Firm: NATIONAL ORGANIZATION FOR RARE DISORDERS, INC. (NORD)
Health issues impacting patients with rare diseases. H.R.2279: Safe Step Act. Rare Disease Advancement, Research, and Education Act (Legislation not yet introduced). Advancing Access to Targeted Therapies Act (Legislation not yet introduced). H.Res.242: Affirming the importance of the Orphan Drug Act, celebrating the over 750 new orphan therapies approved since its creation, and recognizing the need to continue supporting research and development for rare diseases. Pediatric subspecialty loan repayment reauthorization. H.R.2507: Newborn Screening Saves Lives Reauthorization Act of 2019. H.R. 776/S.1173: Emergency Medical Services for Children Program Reauthorization Act of 2019. H.R.1379/S.560: Ensuring Lasting Smiles Act. H.R.2862: VACCINES Act of 2019. Copay Accumulator Adjustment Programs (CAAPs). The Patient-Centered Outcomes Research Institute (PCORI) Reauthorization (Legislation not yet introduced). H.R.2501: Medical Nutrition Equity Act. H.R.1010: To provide that the rule entitled "Short-Term, Limited Duration Insurance" shall have no force or effect. H.R.986: Protecting Americans with Preexisting Conditions Act of 2019. H.R.1884: Protecting Pre-Existing Conditions and Making Health Care More Affordable Act of 2019. S.1125: Protect Act. RIN 0938-ZB45: Patient Protection and Affordable Care Act; Increasing Consumer Choice Through the Sale of Individual Health Insurance Coverage Across State Lines Through Health Care Choice Compacts. H.R.1386/S.1905: ENROLL Act of 2019. H.R.2073/S.110: Medical Expense Savings Act. Guidance on Compliance with the Congressional Review Act.
Protecting Pre-Existing Conditions and Making Health Care More Affordable Act of 2019
Client: NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD) · Firm: NATIONAL ORGANIZATION FOR RARE DISORDERS, INC. (NORD)
Health issues impacting patients with rare diseases. H.R.2279: Safe Step Act. Rare Disease Advancement, Research, and Education Act (Legislation not yet introduced). Advancing Access to Targeted Therapies Act (Legislation not yet introduced). H.Res.242: Affirming the importance of the Orphan Drug Act, celebrating the over 750 new orphan therapies approved since its creation, and recognizing the need to continue supporting research and development for rare diseases. Pediatric subspecialty loan repayment reauthorization. H.R.2507: Newborn Screening Saves Lives Reauthorization Act of 2019. H.R. 776/S.1173: Emergency Medical Services for Children Program Reauthorization Act of 2019. H.R.1379/S.560: Ensuring Lasting Smiles Act. H.R.2862: VACCINES Act of 2019. Copay Accumulator Adjustment Programs (CAAPs). The Patient-Centered Outcomes Research Institute (PCORI) Reauthorization (Legislation not yet introduced). H.R.2501: Medical Nutrition Equity Act. H.R.1010: To provide that the rule entitled "Short-Term, Limited Duration Insurance" shall have no force or effect. H.R.986: Protecting Americans with Preexisting Conditions Act of 2019. H.R.1884: Protecting Pre-Existing Conditions and Making Health Care More Affordable Act of 2019. S.1125: Protect Act. RIN 0938-ZB45: Patient Protection and Affordable Care Act; Increasing Consumer Choice Through the Sale of Individual Health Insurance Coverage Across State Lines Through Health Care Choice Compacts. H.R.1386/S.1905: ENROLL Act of 2019. H.R.2073/S.110: Medical Expense Savings Act. Guidance on Compliance with the Congressional Review Act.
To amend the Internal Revenue Code of 1986 to permanently extend the 7.5 percent adjusted gross income floor for the medical expense deduction.
Client: NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD) · Firm: NATIONAL ORGANIZATION FOR RARE DISORDERS, INC. (NORD)
Health issues impacting patients with rare diseases. H.R.2279: Safe Step Act. Rare Disease Advancement, Research, and Education Act (Legislation not yet introduced). Advancing Access to Targeted Therapies Act (Legislation not yet introduced). H.Res.242: Affirming the importance of the Orphan Drug Act, celebrating the over 750 new orphan therapies approved since its creation, and recognizing the need to continue supporting research and development for rare diseases. Pediatric subspecialty loan repayment reauthorization. H.R.2507: Newborn Screening Saves Lives Reauthorization Act of 2019. H.R. 776/S.1173: Emergency Medical Services for Children Program Reauthorization Act of 2019. H.R.1379/S.560: Ensuring Lasting Smiles Act. H.R.2862: VACCINES Act of 2019. Copay Accumulator Adjustment Programs (CAAPs). The Patient-Centered Outcomes Research Institute (PCORI) Reauthorization (Legislation not yet introduced). H.R.2501: Medical Nutrition Equity Act. H.R.1010: To provide that the rule entitled "Short-Term, Limited Duration Insurance" shall have no force or effect. H.R.986: Protecting Americans with Preexisting Conditions Act of 2019. H.R.1884: Protecting Pre-Existing Conditions and Making Health Care More Affordable Act of 2019. S.1125: Protect Act. RIN 0938-ZB45: Patient Protection and Affordable Care Act; Increasing Consumer Choice Through the Sale of Individual Health Insurance Coverage Across State Lines Through Health Care Choice Compacts. H.R.1386/S.1905: ENROLL Act of 2019. H.R.2073/S.110: Medical Expense Savings Act. Guidance on Compliance with the Congressional Review 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. H.R.2279: Safe Step Act. Rare Disease Advancement, Research, and Education Act (Legislation not yet introduced). Advancing Access to Targeted Therapies Act (Legislation not yet introduced). H.Res.242: Affirming the importance of the Orphan Drug Act, celebrating the over 750 new orphan therapies approved since its creation, and recognizing the need to continue supporting research and development for rare diseases. Pediatric subspecialty loan repayment reauthorization. H.R.2507: Newborn Screening Saves Lives Reauthorization Act of 2019. H.R. 776/S.1173: Emergency Medical Services for Children Program Reauthorization Act of 2019. H.R.1379/S.560: Ensuring Lasting Smiles Act. H.R.2862: VACCINES Act of 2019. Copay Accumulator Adjustment Programs (CAAPs). The Patient-Centered Outcomes Research Institute (PCORI) Reauthorization (Legislation not yet introduced). H.R.2501: Medical Nutrition Equity Act. H.R.1010: To provide that the rule entitled "Short-Term, Limited Duration Insurance" shall have no force or effect. H.R.986: Protecting Americans with Preexisting Conditions Act of 2019. H.R.1884: Protecting Pre-Existing Conditions and Making Health Care More Affordable Act of 2019. S.1125: Protect Act. RIN 0938-ZB45: Patient Protection and Affordable Care Act; Increasing Consumer Choice Through the Sale of Individual Health Insurance Coverage Across State Lines Through Health Care Choice Compacts. H.R.1386/S.1905: ENROLL Act of 2019. H.R.2073/S.110: Medical Expense Savings Act. Guidance on Compliance with the Congressional Review Act.
More Efficient Tools to Realize Information for Consumers 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. Orphan Drug Tax Credit. H.R.1332: Fair Care Act of 2019. H.R.2296: FAIR Drug Pricing Act of 2019. H.R.987: Strengthening Health Care and Lowering Prescription Drug Costs Act. S.474: Stopping the Pharmaceutical Industry from Keeping drugs Expensive (SPIKE) Act of 2019. Rebate Rule Comments. FDA Natural History Studies for Drug Development. Docket No. FDA-2015-D-2818: Rare Diseases: Common Issues in Drug Development, Guidance For Industry; Draft Guidance. H.R.965/S.340: CREATES Act of 2019. Prescription Drug User Fee Act (PDUFA) Reauthorization.
Medical Nutrition Equity Act of 2019
Client: NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD) · Firm: NATIONAL ORGANIZATION FOR RARE DISORDERS, INC. (NORD)
Health issues impacting patients with rare diseases. H.R.2279: Safe Step Act. Rare Disease Advancement, Research, and Education Act (Legislation not yet introduced). Advancing Access to Targeted Therapies Act (Legislation not yet introduced). H.Res.242: Affirming the importance of the Orphan Drug Act, celebrating the over 750 new orphan therapies approved since its creation, and recognizing the need to continue supporting research and development for rare diseases. Pediatric subspecialty loan repayment reauthorization. H.R.2507: Newborn Screening Saves Lives Reauthorization Act of 2019. H.R. 776/S.1173: Emergency Medical Services for Children Program Reauthorization Act of 2019. H.R.1379/S.560: Ensuring Lasting Smiles Act. H.R.2862: VACCINES Act of 2019. Copay Accumulator Adjustment Programs (CAAPs). The Patient-Centered Outcomes Research Institute (PCORI) Reauthorization (Legislation not yet introduced). H.R.2501: Medical Nutrition Equity Act. H.R.1010: To provide that the rule entitled "Short-Term, Limited Duration Insurance" shall have no force or effect. H.R.986: Protecting Americans with Preexisting Conditions Act of 2019. H.R.1884: Protecting Pre-Existing Conditions and Making Health Care More Affordable Act of 2019. S.1125: Protect Act. RIN 0938-ZB45: Patient Protection and Affordable Care Act; Increasing Consumer Choice Through the Sale of Individual Health Insurance Coverage Across State Lines Through Health Care Choice Compacts. H.R.1386/S.1905: ENROLL Act of 2019. H.R.2073/S.110: Medical Expense Savings Act. Guidance on Compliance with the Congressional Review Act.
Newborn Screening Saves Lives Reauthorization Act of 2019
Client: NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD) · Firm: NATIONAL ORGANIZATION FOR RARE DISORDERS, INC. (NORD)
Health issues impacting patients with rare diseases. H.R.2279: Safe Step Act. Rare Disease Advancement, Research, and Education Act (Legislation not yet introduced). Advancing Access to Targeted Therapies Act (Legislation not yet introduced). H.Res.242: Affirming the importance of the Orphan Drug Act, celebrating the over 750 new orphan therapies approved since its creation, and recognizing the need to continue supporting research and development for rare diseases. Pediatric subspecialty loan repayment reauthorization. H.R.2507: Newborn Screening Saves Lives Reauthorization Act of 2019. H.R. 776/S.1173: Emergency Medical Services for Children Program Reauthorization Act of 2019. H.R.1379/S.560: Ensuring Lasting Smiles Act. H.R.2862: VACCINES Act of 2019. Copay Accumulator Adjustment Programs (CAAPs). The Patient-Centered Outcomes Research Institute (PCORI) Reauthorization (Legislation not yet introduced). H.R.2501: Medical Nutrition Equity Act. H.R.1010: To provide that the rule entitled "Short-Term, Limited Duration Insurance" shall have no force or effect. H.R.986: Protecting Americans with Preexisting Conditions Act of 2019. H.R.1884: Protecting Pre-Existing Conditions and Making Health Care More Affordable Act of 2019. S.1125: Protect Act. RIN 0938-ZB45: Patient Protection and Affordable Care Act; Increasing Consumer Choice Through the Sale of Individual Health Insurance Coverage Across State Lines Through Health Care Choice Compacts. H.R.1386/S.1905: ENROLL Act of 2019. H.R.2073/S.110: Medical Expense Savings Act. Guidance on Compliance with the Congressional Review Act.
VACCINES Act of 2019
Client: NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD) · Firm: NATIONAL ORGANIZATION FOR RARE DISORDERS, INC. (NORD)
Health issues impacting patients with rare diseases. H.R.2279: Safe Step Act. Rare Disease Advancement, Research, and Education Act (Legislation not yet introduced). Advancing Access to Targeted Therapies Act (Legislation not yet introduced). H.Res.242: Affirming the importance of the Orphan Drug Act, celebrating the over 750 new orphan therapies approved since its creation, and recognizing the need to continue supporting research and development for rare diseases. Pediatric subspecialty loan repayment reauthorization. H.R.2507: Newborn Screening Saves Lives Reauthorization Act of 2019. H.R. 776/S.1173: Emergency Medical Services for Children Program Reauthorization Act of 2019. H.R.1379/S.560: Ensuring Lasting Smiles Act. H.R.2862: VACCINES Act of 2019. Copay Accumulator Adjustment Programs (CAAPs). The Patient-Centered Outcomes Research Institute (PCORI) Reauthorization (Legislation not yet introduced). H.R.2501: Medical Nutrition Equity Act. H.R.1010: To provide that the rule entitled "Short-Term, Limited Duration Insurance" shall have no force or effect. H.R.986: Protecting Americans with Preexisting Conditions Act of 2019. H.R.1884: Protecting Pre-Existing Conditions and Making Health Care More Affordable Act of 2019. S.1125: Protect Act. RIN 0938-ZB45: Patient Protection and Affordable Care Act; Increasing Consumer Choice Through the Sale of Individual Health Insurance Coverage Across State Lines Through Health Care Choice Compacts. H.R.1386/S.1905: ENROLL Act of 2019. H.R.2073/S.110: Medical Expense Savings Act. Guidance on Compliance with the Congressional Review Act.
Emergency Medical Services for Children Program Reauthorization Act of 2019
Client: NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD) · Firm: NATIONAL ORGANIZATION FOR RARE DISORDERS, INC. (NORD)
Health issues impacting patients with rare diseases. H.R.2279: Safe Step Act. Rare Disease Advancement, Research, and Education Act (Legislation not yet introduced). Advancing Access to Targeted Therapies Act (Legislation not yet introduced). H.Res.242: Affirming the importance of the Orphan Drug Act, celebrating the over 750 new orphan therapies approved since its creation, and recognizing the need to continue supporting research and development for rare diseases. Pediatric subspecialty loan repayment reauthorization. H.R.2507: Newborn Screening Saves Lives Reauthorization Act of 2019. H.R. 776/S.1173: Emergency Medical Services for Children Program Reauthorization Act of 2019. H.R.1379/S.560: Ensuring Lasting Smiles Act. H.R.2862: VACCINES Act of 2019. Copay Accumulator Adjustment Programs (CAAPs). The Patient-Centered Outcomes Research Institute (PCORI) Reauthorization (Legislation not yet introduced). H.R.2501: Medical Nutrition Equity Act. H.R.1010: To provide that the rule entitled "Short-Term, Limited Duration Insurance" shall have no force or effect. H.R.986: Protecting Americans with Preexisting Conditions Act of 2019. H.R.1884: Protecting Pre-Existing Conditions and Making Health Care More Affordable Act of 2019. S.1125: Protect Act. RIN 0938-ZB45: Patient Protection and Affordable Care Act; Increasing Consumer Choice Through the Sale of Individual Health Insurance Coverage Across State Lines Through Health Care Choice Compacts. H.R.1386/S.1905: ENROLL Act of 2019. H.R.2073/S.110: Medical Expense Savings Act. Guidance on Compliance with the Congressional Review Act.
CREATES Act of 2019
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. Orphan Drug Tax Credit. H.R.1332: Fair Care Act of 2019. FDA-2018-N-4171: Patient Engagement in Medical Device Clinical Trials. Docket No. FDA-2018-D-4455-0001: Developing and Submitting Proposed Draft Guidance Relating to Patient Experience Data; Draft Guidance for Industry and Other Stakeholders. Docket No. FDA-2015-D-2818: Rare Diseases: Common Issues in Drug Development, Guidance For Industry; Draft Guidance. H.R.965/S.340: CREATES Act of 2019. FR Document: 2019-01026 Citation: 84 FR 2340: Removal of Safe Harbor Protection for Rebates Involving Prescription Pharmaceuticals and Creation of New Safe Harbor Protection for Certain Point-of-Sale Reductions in Price on Prescription Pharmaceuticals and Certain Pharmacy Benefit Manager Service Fees.
CREATES Act of 2019
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. Orphan Drug Tax Credit. H.R.1332: Fair Care Act of 2019. H.R.2296: FAIR Drug Pricing Act of 2019. H.R.987: Strengthening Health Care and Lowering Prescription Drug Costs Act. S.474: Stopping the Pharmaceutical Industry from Keeping drugs Expensive (SPIKE) Act of 2019. Rebate Rule Comments. FDA Natural History Studies for Drug Development. Docket No. FDA-2015-D-2818: Rare Diseases: Common Issues in Drug Development, Guidance For Industry; Draft Guidance. H.R.965/S.340: CREATES Act of 2019. Prescription Drug User Fee Act (PDUFA) Reauthorization.
Protecting Americans with Preexisting Conditions Act of 2019
Client: NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD) · Firm: NATIONAL ORGANIZATION FOR RARE DISORDERS, INC. (NORD)
Health issues impacting patients with rare diseases. H.R.2279: Safe Step Act. Rare Disease Advancement, Research, and Education Act (Legislation not yet introduced). Advancing Access to Targeted Therapies Act (Legislation not yet introduced). H.Res.242: Affirming the importance of the Orphan Drug Act, celebrating the over 750 new orphan therapies approved since its creation, and recognizing the need to continue supporting research and development for rare diseases. Pediatric subspecialty loan repayment reauthorization. H.R.2507: Newborn Screening Saves Lives Reauthorization Act of 2019. H.R. 776/S.1173: Emergency Medical Services for Children Program Reauthorization Act of 2019. H.R.1379/S.560: Ensuring Lasting Smiles Act. H.R.2862: VACCINES Act of 2019. Copay Accumulator Adjustment Programs (CAAPs). The Patient-Centered Outcomes Research Institute (PCORI) Reauthorization (Legislation not yet introduced). H.R.2501: Medical Nutrition Equity Act. H.R.1010: To provide that the rule entitled "Short-Term, Limited Duration Insurance" shall have no force or effect. H.R.986: Protecting Americans with Preexisting Conditions Act of 2019. H.R.1884: Protecting Pre-Existing Conditions and Making Health Care More Affordable Act of 2019. S.1125: Protect Act. RIN 0938-ZB45: Patient Protection and Affordable Care Act; Increasing Consumer Choice Through the Sale of Individual Health Insurance Coverage Across State Lines Through Health Care Choice Compacts. H.R.1386/S.1905: ENROLL Act of 2019. H.R.2073/S.110: Medical Expense Savings Act. Guidance on Compliance with the Congressional Review Act.
Strengthening Health Care and Lowering Prescription Drug Costs 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. Orphan Drug Tax Credit. H.R.1332: Fair Care Act of 2019. H.R.2296: FAIR Drug Pricing Act of 2019. H.R.987: Strengthening Health Care and Lowering Prescription Drug Costs Act. S.474: Stopping the Pharmaceutical Industry from Keeping drugs Expensive (SPIKE) Act of 2019. Rebate Rule Comments. FDA Natural History Studies for Drug Development. Docket No. FDA-2015-D-2818: Rare Diseases: Common Issues in Drug Development, Guidance For Industry; Draft Guidance. H.R.965/S.340: CREATES Act of 2019. Prescription Drug User Fee Act (PDUFA) Reauthorization.
Affirming the importance of the Orphan Drug Act, celebrating the over 750 new orphan therapies approved since its creation, and recognizing the need to continue supporting research and development for rare diseases.
Client: NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD) · Firm: NATIONAL ORGANIZATION FOR RARE DISORDERS, INC. (NORD)
Health issues impacting patients with rare diseases. H.R.2279: Safe Step Act. Rare Disease Advancement, Research, and Education Act (Legislation not yet introduced). Advancing Access to Targeted Therapies Act (Legislation not yet introduced). H.Res.242: Affirming the importance of the Orphan Drug Act, celebrating the over 750 new orphan therapies approved since its creation, and recognizing the need to continue supporting research and development for rare diseases. Pediatric subspecialty loan repayment reauthorization. H.R.2507: Newborn Screening Saves Lives Reauthorization Act of 2019. H.R. 776/S.1173: Emergency Medical Services for Children Program Reauthorization Act of 2019. H.R.1379/S.560: Ensuring Lasting Smiles Act. H.R.2862: VACCINES Act of 2019. Copay Accumulator Adjustment Programs (CAAPs). The Patient-Centered Outcomes Research Institute (PCORI) Reauthorization (Legislation not yet introduced). H.R.2501: Medical Nutrition Equity Act. H.R.1010: To provide that the rule entitled "Short-Term, Limited Duration Insurance" shall have no force or effect. H.R.986: Protecting Americans with Preexisting Conditions Act of 2019. H.R.1884: Protecting Pre-Existing Conditions and Making Health Care More Affordable Act of 2019. S.1125: Protect Act. RIN 0938-ZB45: Patient Protection and Affordable Care Act; Increasing Consumer Choice Through the Sale of Individual Health Insurance Coverage Across State Lines Through Health Care Choice Compacts. H.R.1386/S.1905: ENROLL Act of 2019. H.R.2073/S.110: Medical Expense Savings Act. Guidance on Compliance with the Congressional Review Act.
Medical Expense Savings Act
Client: NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD) · Firm: NATIONAL ORGANIZATION FOR RARE DISORDERS, INC. (NORD)
Health issues impacting patients with rare diseases. H.R.2279: Safe Step Act. Rare Disease Advancement, Research, and Education Act (Legislation not yet introduced). Advancing Access to Targeted Therapies Act (Legislation not yet introduced). H.Res.242: Affirming the importance of the Orphan Drug Act, celebrating the over 750 new orphan therapies approved since its creation, and recognizing the need to continue supporting research and development for rare diseases. Pediatric subspecialty loan repayment reauthorization. H.R.2507: Newborn Screening Saves Lives Reauthorization Act of 2019. H.R. 776/S.1173: Emergency Medical Services for Children Program Reauthorization Act of 2019. H.R.1379/S.560: Ensuring Lasting Smiles Act. H.R.2862: VACCINES Act of 2019. Copay Accumulator Adjustment Programs (CAAPs). The Patient-Centered Outcomes Research Institute (PCORI) Reauthorization (Legislation not yet introduced). H.R.2501: Medical Nutrition Equity Act. H.R.1010: To provide that the rule entitled "Short-Term, Limited Duration Insurance" shall have no force or effect. H.R.986: Protecting Americans with Preexisting Conditions Act of 2019. H.R.1884: Protecting Pre-Existing Conditions and Making Health Care More Affordable Act of 2019. S.1125: Protect Act. RIN 0938-ZB45: Patient Protection and Affordable Care Act; Increasing Consumer Choice Through the Sale of Individual Health Insurance Coverage Across State Lines Through Health Care Choice Compacts. H.R.1386/S.1905: ENROLL Act of 2019. H.R.2073/S.110: Medical Expense Savings Act. Guidance on Compliance with the Congressional Review Act.
Protect Act
Client: NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD) · Firm: NATIONAL ORGANIZATION FOR RARE DISORDERS, INC. (NORD)
Health issues impacting patients with rare diseases. H.R.2279: Safe Step Act. Rare Disease Advancement, Research, and Education Act (Legislation not yet introduced). Advancing Access to Targeted Therapies Act (Legislation not yet introduced). H.Res.242: Affirming the importance of the Orphan Drug Act, celebrating the over 750 new orphan therapies approved since its creation, and recognizing the need to continue supporting research and development for rare diseases. Pediatric subspecialty loan repayment reauthorization. H.R.2507: Newborn Screening Saves Lives Reauthorization Act of 2019. H.R. 776/S.1173: Emergency Medical Services for Children Program Reauthorization Act of 2019. H.R.1379/S.560: Ensuring Lasting Smiles Act. H.R.2862: VACCINES Act of 2019. Copay Accumulator Adjustment Programs (CAAPs). The Patient-Centered Outcomes Research Institute (PCORI) Reauthorization (Legislation not yet introduced). H.R.2501: Medical Nutrition Equity Act. H.R.1010: To provide that the rule entitled "Short-Term, Limited Duration Insurance" shall have no force or effect. H.R.986: Protecting Americans with Preexisting Conditions Act of 2019. H.R.1884: Protecting Pre-Existing Conditions and Making Health Care More Affordable Act of 2019. S.1125: Protect Act. RIN 0938-ZB45: Patient Protection and Affordable Care Act; Increasing Consumer Choice Through the Sale of Individual Health Insurance Coverage Across State Lines Through Health Care Choice Compacts. H.R.1386/S.1905: ENROLL Act of 2019. H.R.2073/S.110: Medical Expense Savings Act. Guidance on Compliance with the Congressional Review Act.
Emergency Medical Services for Children Program Reauthorization Act of 2019
Client: NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD) · Firm: NATIONAL ORGANIZATION FOR RARE DISORDERS, INC. (NORD)
Health issues impacting patients with rare diseases. H.R.2279: Safe Step Act. Rare Disease Advancement, Research, and Education Act (Legislation not yet introduced). Advancing Access to Targeted Therapies Act (Legislation not yet introduced). H.Res.242: Affirming the importance of the Orphan Drug Act, celebrating the over 750 new orphan therapies approved since its creation, and recognizing the need to continue supporting research and development for rare diseases. Pediatric subspecialty loan repayment reauthorization. H.R.2507: Newborn Screening Saves Lives Reauthorization Act of 2019. H.R. 776/S.1173: Emergency Medical Services for Children Program Reauthorization Act of 2019. H.R.1379/S.560: Ensuring Lasting Smiles Act. H.R.2862: VACCINES Act of 2019. Copay Accumulator Adjustment Programs (CAAPs). The Patient-Centered Outcomes Research Institute (PCORI) Reauthorization (Legislation not yet introduced). H.R.2501: Medical Nutrition Equity Act. H.R.1010: To provide that the rule entitled "Short-Term, Limited Duration Insurance" shall have no force or effect. H.R.986: Protecting Americans with Preexisting Conditions Act of 2019. H.R.1884: Protecting Pre-Existing Conditions and Making Health Care More Affordable Act of 2019. S.1125: Protect Act. RIN 0938-ZB45: Patient Protection and Affordable Care Act; Increasing Consumer Choice Through the Sale of Individual Health Insurance Coverage Across State Lines Through Health Care Choice Compacts. H.R.1386/S.1905: ENROLL Act of 2019. H.R.2073/S.110: Medical Expense Savings Act. Guidance on Compliance with the Congressional Review Act.
ENROLL Act of 2019
Client: NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD) · Firm: NATIONAL ORGANIZATION FOR RARE DISORDERS, INC. (NORD)
Health issues impacting patients with rare diseases. H.R.2279: Safe Step Act. Rare Disease Advancement, Research, and Education Act (Legislation not yet introduced). Advancing Access to Targeted Therapies Act (Legislation not yet introduced). H.Res.242: Affirming the importance of the Orphan Drug Act, celebrating the over 750 new orphan therapies approved since its creation, and recognizing the need to continue supporting research and development for rare diseases. Pediatric subspecialty loan repayment reauthorization. H.R.2507: Newborn Screening Saves Lives Reauthorization Act of 2019. H.R. 776/S.1173: Emergency Medical Services for Children Program Reauthorization Act of 2019. H.R.1379/S.560: Ensuring Lasting Smiles Act. H.R.2862: VACCINES Act of 2019. Copay Accumulator Adjustment Programs (CAAPs). The Patient-Centered Outcomes Research Institute (PCORI) Reauthorization (Legislation not yet introduced). H.R.2501: Medical Nutrition Equity Act. H.R.1010: To provide that the rule entitled "Short-Term, Limited Duration Insurance" shall have no force or effect. H.R.986: Protecting Americans with Preexisting Conditions Act of 2019. H.R.1884: Protecting Pre-Existing Conditions and Making Health Care More Affordable Act of 2019. S.1125: Protect Act. RIN 0938-ZB45: Patient Protection and Affordable Care Act; Increasing Consumer Choice Through the Sale of Individual Health Insurance Coverage Across State Lines Through Health Care Choice Compacts. H.R.1386/S.1905: ENROLL Act of 2019. H.R.2073/S.110: Medical Expense Savings Act. Guidance on Compliance with the Congressional Review Act.
A bill to promote competition in the market for drugs and biological products by facilitating the timely entry of lower-cost generic and biosimilar versions of those drugs and biological products.
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. Orphan Drug Tax Credit. H.R.1332: Fair Care Act of 2019. FDA-2018-N-4171: Patient Engagement in Medical Device Clinical Trials. Docket No. FDA-2018-D-4455-0001: Developing and Submitting Proposed Draft Guidance Relating to Patient Experience Data; Draft Guidance for Industry and Other Stakeholders. Docket No. FDA-2015-D-2818: Rare Diseases: Common Issues in Drug Development, Guidance For Industry; Draft Guidance. H.R.965/S.340: CREATES Act of 2019. FR Document: 2019-01026 Citation: 84 FR 2340: Removal of Safe Harbor Protection for Rebates Involving Prescription Pharmaceuticals and Creation of New Safe Harbor Protection for Certain Point-of-Sale Reductions in Price on Prescription Pharmaceuticals and Certain Pharmacy Benefit Manager Service Fees.
A bill to promote competition in the market for drugs and biological products by facilitating the timely entry of lower-cost generic and biosimilar versions of those drugs and biological products.
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. Orphan Drug Tax Credit. H.R.1332: Fair Care Act of 2019. H.R.2296: FAIR Drug Pricing Act of 2019. H.R.987: Strengthening Health Care and Lowering Prescription Drug Costs Act. S.474: Stopping the Pharmaceutical Industry from Keeping drugs Expensive (SPIKE) Act of 2019. Rebate Rule Comments. FDA Natural History Studies for Drug Development. Docket No. FDA-2015-D-2818: Rare Diseases: Common Issues in Drug Development, Guidance For Industry; Draft Guidance. H.R.965/S.340: CREATES Act of 2019. Prescription Drug User Fee Act (PDUFA) Reauthorization.
Stopping the Pharmaceutical Industry from Keeping drugs Expensive (SPIKE) Act of 2019
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. Orphan Drug Tax Credit. H.R.1332: Fair Care Act of 2019. H.R.2296: FAIR Drug Pricing Act of 2019. H.R.987: Strengthening Health Care and Lowering Prescription Drug Costs Act. S.474: Stopping the Pharmaceutical Industry from Keeping drugs Expensive (SPIKE) Act of 2019. Rebate Rule Comments. FDA Natural History Studies for Drug Development. Docket No. FDA-2015-D-2818: Rare Diseases: Common Issues in Drug Development, Guidance For Industry; Draft Guidance. H.R.965/S.340: CREATES Act of 2019. Prescription Drug User Fee Act (PDUFA) Reauthorization.
Ensuring Lasting Smiles Act
Client: NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD) · Firm: NATIONAL ORGANIZATION FOR RARE DISORDERS, INC. (NORD)
Health issues impacting patients with rare diseases. H.R.2279: Safe Step Act. Rare Disease Advancement, Research, and Education Act (Legislation not yet introduced). Advancing Access to Targeted Therapies Act (Legislation not yet introduced). H.Res.242: Affirming the importance of the Orphan Drug Act, celebrating the over 750 new orphan therapies approved since its creation, and recognizing the need to continue supporting research and development for rare diseases. Pediatric subspecialty loan repayment reauthorization. H.R.2507: Newborn Screening Saves Lives Reauthorization Act of 2019. H.R. 776/S.1173: Emergency Medical Services for Children Program Reauthorization Act of 2019. H.R.1379/S.560: Ensuring Lasting Smiles Act. H.R.2862: VACCINES Act of 2019. Copay Accumulator Adjustment Programs (CAAPs). The Patient-Centered Outcomes Research Institute (PCORI) Reauthorization (Legislation not yet introduced). H.R.2501: Medical Nutrition Equity Act. H.R.1010: To provide that the rule entitled "Short-Term, Limited Duration Insurance" shall have no force or effect. H.R.986: Protecting Americans with Preexisting Conditions Act of 2019. H.R.1884: Protecting Pre-Existing Conditions and Making Health Care More Affordable Act of 2019. S.1125: Protect Act. RIN 0938-ZB45: Patient Protection and Affordable Care Act; Increasing Consumer Choice Through the Sale of Individual Health Insurance Coverage Across State Lines Through Health Care Choice Compacts. H.R.1386/S.1905: ENROLL Act of 2019. H.R.2073/S.110: Medical Expense Savings Act. Guidance on Compliance with the Congressional Review Act.
Health issues impacting patients with rare diseases. H.R.2279: Safe Step Act. Rare Disease Advancement, Research, and Education Act (Legislation not yet introduced). Advancing Access to Targeted Therapies Act (Legislation not yet introduced). H.Res.242: Affirming the importance of the Orphan Drug Act, celebrating the over 750 new orphan therapies approved since its creation, and recognizing the need to continue supporting research and development for rare diseases. Pediatric subspecialty loan repayment reauthorization. H.R.2507: Newborn Screening Saves Lives Reauthorization Act of 2019. H.R. 776/S.1173: Emergency Medical Services for Children Program Reauthorization Act of 2019. H.R.1379/S.560: Ensuring Lasting Smiles Act. H.R.2862: VACCINES Act of 2019. Copay Accumulator Adjustment Programs (CAAPs). The Patient-Centered Outcomes Research Institute (PCORI) Reauthorization (Legislation not yet introduced). H.R.2501: Medical Nutrition Equity Act. H.R.1010: To provide that the rule entitled "Short-Term, Limited Duration Insurance" shall have no force or effect. H.R.986: Protecting Americans with Preexisting Conditions Act of 2019. H.R.1884: Protecting Pre-Existing Conditions and Making Health Care More Affordable Act of 2019. S.1125: Protect Act. RIN 0938-ZB45: Patient Protection and Affordable Care Act; Increasing Consumer Choice Through the Sale of Individual Health Insurance Coverage Across State Lines Through Health Care Choice Compacts. H.R.1386/S.1905: ENROLL Act of 2019. H.R.2073/S.110: Medical Expense Savings Act. Guidance on Compliance with the Congressional Review Act.
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), Office of Management & Budget (OMB), SENATE
NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD) via NATIONAL ORGANIZATION FOR RARE DISORDERS, INC. (NORD)
2019 · first_quarter · Q1
Pharmaceutical issues impacting patients with rare diseases. Orphan Drug Act. Orphan Drug Tax Credit. H.R.1332: Fair Care Act of 2019. FDA-2018-N-4171: Patient Engagement in Medical Device Clinical Trials. Docket No. FDA-2018-D-4455-0001: Developing and Submitting Proposed Draft Guidance Relating to Patient Experience Data; Draft Guidance for Industry and Other Stakeholders. Docket No. FDA-2015-D-2818: Rare Diseases: Common Issues in Drug Development, Guidance For Industry; Draft Guidance. H.R.965/S.340: CREATES Act of 2019. FR Document: 2019-01026 Citation: 84 FR 2340: Removal of Safe Harbor Protection for Rebates Involving Prescription Pharmaceuticals and Creation of New Safe Harbor Protection for Certain Point-of-Sale Reductions in Price on Prescription Pharmaceuticals and Certain Pharmacy Benefit Manager Service Fees.
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