NATIONAL ORGANIZATION FOR RARE DISORDERS, INC. (NORD) for NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD)
A later version of this report replaces this one, so LegiList's totals use the current version instead. This page shows this version exactly as filed.
No amount is shown when the filer reports less than $5,000 for the period, which the form does not ask them to state.
Versions of this report
Every filing the register holds for this firm, client and period, oldest first. The most recent one is the version LegiList counts.
| Filing | Filed | Amount | Counted |
|---|---|---|---|
| 4th Quarter - Report (this page) | Jan 25, 2019 | — | Replaced |
| 4th Quarter - Amendment | Jul 23, 2019 | $80,000 | Yes |
What was lobbied
One issue area, each in the filer's own words, with who lobbied on it and where.
Health Issues HCR
Medicare Part D 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; H.Res.1154 A resolution affirming the importance of the Orphan Drug Act, applauding the life-saving accomplishments of the Act during its 35-year history, and recognizing the need to continue support for research and development of new therapies for rare diseases; S.Res.690 Step therapy in Medicare Advantage plans Restoring the Patient's Voice Act of 2017; H.R.2077 Rare disease Advancement, Research, and Education Act of 2018; H.R.5115 National Institutes of Health funding Food and Drug Administration appropriations Orphan Drug Act Medical Nutrition Equity Act of 2017; H.R.2587, S.1194 Short-term, limited-duration health plans Association health plans Section 1115 waivers Section 1332 waivers Copay accumulator programs FY19 Labor, Health and Human Services, Education/Defense appropriations conference report; H.R.6157 Medicaid expansion Pediatric subspecialty loan repayment reauthorization Patient-focused drug development Human gene therapy for rare diseases Rare disease early development and the role of pre-investigational new drug application meetings International pricing index model for Medicare part B drugs Newborn Screening Saves Lives Act reauthorization Neurological Conditions Surveillance System funding MODERN Labeling Act of 2018; S.3519 ENROLL Act of 2018; H.R.7102
| Lobbyist | Covered position, as disclosed |
|---|---|
| PAUL MELMEYER | — |
| MELANIE SWICK BUZZELLI | — |
Shown as published by the Senate Office of Public Records and the House Clerk under the Lobbying Disclosure Act. The official filing is the record; open it for the full form.