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

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. H.R.2587/S.1194: S.1194 - Medical Nutrition Equity Act of 2017. Short-term, limited-duration health plans. Association health plans. Pediatric subspecialty loan repayment reauthorization. Human gene therapy for rare diseases. Newborn Screening Saves Lives Act reauthorization. Neurological Conditions Surveillance System funding. H.R.7102: ENROLL Act of 2018.

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

Bills named: S. 1194 (115th), H.R. 7102 (115th), H.R. 2077 (115th), H.R. 5115 (115th), H.R. 2587 (115th)

Medicare/Medicaid MMM

Medicare issues impacting patients with rare diseases. Medicare Part D. Step therapy in Medicare Advantage plans. Section 1115 waivers. Section 1332 waivers. Copay accumulator programs. Medicaid expansion. International pricing index model for Medicare part B drugs.

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

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

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

Pharmacy PHA

Pharmaceutical issues impacting patients with rare diseases. H.Res.1154/S.Res.690: Affirming the importance of the Orphan Drug Act, applauding its lifesaving contributions over its 35-year history, and recognizing the need to continue supporting research and development for rare diseases. Patient-focused drug development. Rare disease early development and the role of pre-investigational new drug application meetings. S.3519: MODERN Labeling Act.

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

Bills named: S. 3519 (115th), H.Res. 1154 (115th), S.Res. 690 (115th)