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

Medicare/Medicaid MMM

Medicare issues impacting patients with rare diseases. Medicare Part D. Step therapy in Medicare Advantage plans. Medicaid waivers. Section 1332 waivers. Medicaid expansion.

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

Budget/Appropriations BUD

Appropriations for patients with rare diseases. National Institutes of Health Funding. Food and Drug Administration Funding. H.R.6157: Department of Defense and Labor, Health and Human Services, and Education Appropriations Act, 2019 and Continuing Appropriations Act, 2019.

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

Bills named: H.R. 6157 (115th)

Health Issues HCR

Health issues impacting patients with rare diseases. H.R.2077: Restoring the Patient's Voice Act of 2017. H.R.5115: Rare Disease Advancement, Research, and Education (RARE) Act of 2018. Senator Cassidy's "Ideas to Make Health Care Affordable Again" white paper. H.R.2587/S.1194: S.1194 - Medical Nutrition Equity Act of 2017. Short-term, limited-duration health plans. Association health plans. Copay accumulator programs. Slowly progressive low-prevalence rare diseases. S.3388: Ensuring Coverage for Patients with Pre-Existing Conditions Act. Pediatric subspecialty loan repayment reauthorization. Medical expense deduction. Humanitarian Device Exemption (HDE) program. Risk adjustment payments.

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

Bills named: S. 1194 (115th), H.R. 2077 (115th), H.R. 2587 (115th), H.R. 5115 (115th), S. 3388 (115th)

Pharmacy PHA

Pharmaceutical issues impacting patients with rare diseases. H.R.1223/S.1509: Orphan Products Extension Now Accelerating Cures and Treatments Act of 2017. Patient-focused drug development. Biological products marketplace. HHS Blueprint to Lower Drug Prices and Reduce Out-of-Pocket Costs.

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

Bills named: H.R. 1223 (115th), S. 1509 (115th)