NATIONAL ORGANIZATION FOR RARE DISORDERS, INC. (NORD) for NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD)

Budget/Appropriations BUD

Appropriations for patients with rare diseases. Food and Drug Administration Appropriations. Emergency Medical Services for Children (EMSC) program appropriations. Pediatric Device Consortia (PDC) Grant Program.

Contacted: Office of Management & Budget (OMB); Natl Institutes of Health (NIH); Health & Human Services, Dept of (HHS); SENATE; Centers For Medicare and Medicaid Services (CMS); Food & Drug Administration (FDA); HOUSE OF REPRESENTATIVES

Medicare/Medicaid MMM

Medicare issues impacting patients with rare diseases. Medicare Part D Program. Section 1115 Waivers. CMS Rebate Rule. CMS-9926-P: Proposed HHS Notice of Benefit and Payment Parameters for 2020. Fiscal Year 2020 Medicare Hospital Inpatient Prospective Payment System (IPPS). CMS-1716-P: FY 2020 LTCH PPS Proposed Rule.

Contacted: SENATE; HOUSE OF REPRESENTATIVES; Health & Human Services, Dept of (HHS); Office of Management & Budget (OMB); Natl Institutes of Health (NIH); Food & Drug Administration (FDA); Centers For Medicare and Medicaid Services (CMS)

Copyright/Patent/Trademark CPT

Section 101 of the Patent Act.

Contacted: SENATE; HOUSE OF REPRESENTATIVES; Centers For Medicare and Medicaid Services (CMS); Food & Drug Administration (FDA); Natl Institutes of Health (NIH); Office of Management & Budget (OMB); Health & Human Services, Dept of (HHS)

Health Issues HCR

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.

Contacted: Food & Drug Administration (FDA); SENATE; Centers For Medicare and Medicaid Services (CMS); HOUSE OF REPRESENTATIVES; Natl Institutes of Health (NIH); Health & Human Services, Dept of (HHS); Office of Management & Budget (OMB)

Bills named: H.R. 2073 (116th), H.R. 776 (116th), H.R. 1386 (116th), H.R. 2862 (116th), H.R. 2279 (116th), S. 1125 (116th), H.R. 1010 (116th), S. 560 (116th), H.R. 986 (116th), H.Res. 242 (116th), H.R. 2501 (116th), S. 110 (116th), S. 1905 (116th), H.R. 1379 (116th), H.R. 2507 (116th), H.R. 1884 (116th), S. 1173 (116th)

Pharmacy PHA

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.

Contacted: Food & Drug Administration (FDA); Office of Management & Budget (OMB); SENATE; Centers For Medicare and Medicaid Services (CMS); HOUSE OF REPRESENTATIVES; Health & Human Services, Dept of (HHS); Natl Institutes of Health (NIH)

Bills named: H.R. 965 (116th), S. 474 (116th), H.R. 1332 (116th), S. 340 (116th), H.R. 987 (116th), H.R. 2296 (116th)