1st 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
1st Quarter - Report	Apr 20, 2018	—	Replaced
1st 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.

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

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

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. H.R.5062: Advancing Access to Precision Medicine Act.

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

Bills named: H.R. 1223 (115th), H.R. 5062 (115th), S. 1509 (115th)

Health Issues HCR

Health issues impacting patients with rare diseases. Bipartisan Health Care Stabilization Act. 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. S.428: Advancing Care for Exceptional Kids Act of 2017 or the ACE Kids Act of 2017. Congressionally Directed Medical Research Program. S.Res.423: A resolution designating February 28, 2018, as "Rare Disease Day". Short-term, limited-duration health plans. Association health plans. H.R.2077: Restoring the Patient's Voice Act of 2017.

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

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

Bills named: S. 1194 (115th), H.R. 5115 (115th), S. 204 (115th), S.Res. 423 (115th), S. 428 (115th), H.R. 5247 (115th), H.R. 2077 (115th), H.R. 2587 (115th)

Budget/Appropriations BUD

Appropriations for patients with rare diseases. National Institutes of Health Funding. Food and Drug Administration Funding. Pediatric Device Consortia Grant Program.

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

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

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.