1st Quarter - Amendment — NATIONAL ORGANIZATION FOR RARE DISORDER… for NATIONAL ORGANIZATION FOR RARE DISORDER… (2022)

Firm

NATIONAL ORGANIZATION FOR RARE DISORDERS, INC. (NORD)

Client

NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD)

Income

—

Expenses

$40,000

Expense method

B: tax-exempt organisations, Internal Revenue Code section 6033(b)(8)

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, 2022	$40,000	Replaced
1st Quarter - Amendment (this page)	May 6, 2022	$40,000	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 / Medicaid issues impacting patients with rare diseases.

Lobbyist	Covered position, as disclosed
CORINNE ALBERTS	—
HEIDI ROSS	—

Contacted: Centers For Medicare and Medicaid Services (CMS); SENATE; HOUSE OF REPRESENTATIVES; Health & Human Services, Dept of (HHS)

Health Issues HCR

Rare disease initiatives. Newborn screening. Genetic testing. Affordable Care Act (ACA) Issues and Enhancements as it Relates to H.R.5376 - Build Back Better Act. Telehealth legislation.

Lobbyist	Covered position, as disclosed
CORINNE ALBERTS	—
HEIDI ROSS	—

Contacted: Health & Human Services, Dept of (HHS); Centers For Medicare and Medicaid Services (CMS); SENATE; HOUSE OF REPRESENTATIVES

Bills named: H.R. 5376 (117th)

Pharmacy PHA

Pharmaceutical issues impacting patients with rare diseases. Orphan Drug Act. User Fee Agreements. Prescription Drug User Fee Act (PDUFA).

Lobbyist	Covered position, as disclosed
CORINNE ALBERTS	—
HEIDI ROSS	—

Contacted: Health & Human Services, Dept of (HHS); HOUSE OF REPRESENTATIVES; SENATE

Taxation/Internal Revenue Code TAX

Orphan Drug Tax Credit Issues.

Lobbyist	Covered position, as disclosed
HEIDI ROSS	—

Contacted: 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.