2nd Quarter - Amendment — NATIONAL ORGANIZATION FOR RARE DISORDER… for NATIONAL ORGANIZATION FOR RARE DISORDER… (2018)

Firm

NATIONAL ORGANIZATION FOR RARE DISORDERS, INC. (NORD)

Client

NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD)

Income

—

Expenses

$60,000

Expense method

A: Lobbying Disclosure Act definitions

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
2nd Quarter - Report	Jul 25, 2018	—	Replaced
2nd Quarter - Amendment (this page)	Jul 23, 2019	$60,000	Yes

What was lobbied

4 issue areas, each in the filer's own words, with who lobbied on it and where.

Medicare/Medicaid MMM

Medicare issues impacting patients with rare diseases. Medicare Part D. Medicaid waivers. S.3000: Patient Advocacy Transparency Act. Inpatient Prospective Payment System (IPPS) proposed rule.

Lobbyist	Covered position, as disclosed
PAUL MELMEYER	—
PETER SALTONSTALL	—
MELANIE SWICK BUZZELLI	—

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

Bills named: S. 3000 (115th)

Health Issues HCR

Health issues impacting patients with rare diseases. H.R.5247/S.204: Trickett Wendler, Frank Mongiello, Jordan McLinn, and Matthew Bellina Right to Try Act of 2018. 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. Congressionally Directed Medical Research Program. Short-term, limited-duration health plans. Association health plans.

Lobbyist	Covered position, as disclosed
PAUL MELMEYER	—
PETER SALTONSTALL	—
MELANIE SWICK BUZZELLI	—

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

Bills named: S. 204 (115th), H.R. 5115 (115th), H.R. 5247 (115th), S. 1194 (115th), H.R. 2587 (115th)

Budget/Appropriations BUD

Appropriations for patients with rare diseases. National Institutes of Health Funding. Food and Drug Administration Funding.

Lobbyist	Covered position, as disclosed
PAUL MELMEYER	—
PETER SALTONSTALL	—
MELANIE SWICK BUZZELLI	—

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

Pharmacy PHA

Pharmaceutical issues impacting patients with rare diseases. Orphan Drug Act. H.R.1223/S.1509: Orphan Products Extension Now Accelerating Cures and Treatments Act of 2017. Accelerated Approval. S.3000: Patient Advocacy Transparency Act. HHS Blueprint to Lower Drug Prices and Reduce Out-of-Pocket Costs.

Lobbyist	Covered position, as disclosed
PAUL MELMEYER	—
PETER SALTONSTALL	—
MELANIE SWICK BUZZELLI	—

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

Bills named: H.R. 1223 (115th), S. 1509 (115th), S. 3000 (115th)

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.