NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD) — Lobbying Disclosure | Poliscope

NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD)

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This entity appears on both sides of lobbying disclosures. The firm tab shows registrant-reported income; the client tab shows client-reported lobbying spend. Contract awards are separate and are not included here.

Lobbying Spend

$2.4M

Filings

Firms Hired

Active Period

2001–2026

Lobbying Spend by Year

Client-reported lobbying expenses on LDA filings

Year	Lobbying Spend	Filings	Firms
2026	$200,000	3	1
2025	$250,000	5	1
2024	$240,000	4	1
2023	$140,000	4	1
2022	$210,000	5	1
2021	$360,000	4	1
2020	$360,000	4	1
2019	$320,000	4	1
2018	$270,000	8	1
2017	—	5	1
2016	—	4	1
2015	—	4	1
2014	—	9	1
2013	—	4	1
2012	—	6	1
2011	—	4	1
2010	—	4	1
2009	—	4	1
2008	—	6	1
2007	—	1	1
2004	$0	1	1
2003	$0	2	1
2002	$0	1	1
2001	$0	2	1

Hired Firms

Lobbying firms retained by this client; amounts are client-reported expenses when available

Firm Name	Reported Spend	Filings
NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD)	$2,350,000	98

Government Bodies Lobbied

Government entities explicitly identified as targets in LDA filings

Government Body	Filings
HOUSE OF REPRESENTATIVES	92
SENATE	91
Food & Drug Administration (FDA)	74
Centers For Medicare and Medicaid Services (CMS)	50
Health & Human Services, Dept of (HHS)	47
Social Security Administration (SSA)	38
Natl Institutes of Health (NIH)	37
White House Office	5
Centers For Disease Control & Prevention (CDC)	3
Office of Management & Budget (OMB)	3
Bureau of Citizenship & Immigration Services (BCIS)	1
Government Accountability Office (GAO)	1
Homeland Security, Dept of (DHS)	1
Natl Institute of Standards & Technology (NIST)	1

Top Issues

Most frequently reported lobbying issues

Issue Code	Description	Reports
Health Issues	Health Issues	92
Medicare/Medicaid	Medicare/Medicaid	37
Pharmacy	Pharmacy	35
Budget/Appropriations	Budget/Appropriations	26
Medical/Disease Research/Clinical Labs	Medical/Disease Research/Clinical Labs	6
Taxation/Internal Revenue Code	Taxation/Internal Revenue Code	4
Copyright/Patent/Trademark	Copyright/Patent/Trademark	2
Immigration	Immigration	1
Consumer Issues/Safety/Products	Consumer Issues/Safety/Products	1

Bills Explicitly Cited (25)

Bill numbers found in source-reported LDA specific issue text; broad topic matches are excluded

H.R. 7383118th Congress

RARE Act

2025 · fourth_quarter · Firm: NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD)

Open original LDA filing ↗

Cited source text and reported amounts

Pharmaceutical issues impacting patients with rare diseases. PRV Reauthorization. H.R.7383/S.1214: RARE Act. Inflation Reduction Act Implementation.

Client expense: $30,000 · Firm income: —

Matched citations: H.R.7383

S. 1214118th Congress

RARE Act

2025 · fourth_quarter · Firm: NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD)

Open original LDA filing ↗

Cited source text and reported amounts

Pharmaceutical issues impacting patients with rare diseases. PRV Reauthorization. H.R.7383/S.1214: RARE Act. Inflation Reduction Act Implementation.

Client expense: $30,000 · Firm income: —

Matched citations: S.1214

H.R. 1414119th Congress

Cameron’s Law

2025 · second_quarter · Firm: NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD)

Open original LDA filing ↗

Cited source text and reported amounts

Pharmaceutical issues impacting patients with rare diseases. Orphan Drug Act. Prescription Drug User Fee Act (PDUFA) Reauthorization. RARE Act. Inflation Reduction Act Implementation. PRV Reauthorization. H.R.1414: Camerons Law. Promising Pathways Act 2.0.

Client expense: $60,000 · Firm income: —

Matched citations: H.R.1414

H.R. 1414119th Congress

Cameron’s Law

2025 · second_quarter · Firm: NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD)

Open original LDA filing ↗

Cited source text and reported amounts

Pharmaceutical issues impacting patients with rare diseases. Orphan Drug Act. Prescription Drug User Fee Act (PDUFA) Reauthorization. RARE Act. Inflation Reduction Act Implementation. PRV Reauthorization. H.R.1414: Camerons Law. Promising Pathways Act 2.0.

Client expense: $50,000 · Firm income: —

Matched citations: H.R.1414

Show 21 more cited filings

H.R. 1414119th Congress

Cameron’s Law

2025 · first_quarter · Firm: NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD)

Open original LDA filing ↗

Cited source text and reported amounts

Pharmaceutical issues impacting patients with rare diseases. Orphan Drug Act. Prescription Drug User Fee Act (PDUFA) Reauthorization. User Fee Agreements. RARE Act. Inflation Reduction Act Implementation. PRV Reauthorization. Accelerated Approval. S.705: Innovation in Pediatric Drugs Act of 2025. H.R.1414: Camerons Law. Promising Pathways Act 2.0.

Client expense: $50,000 · Firm income: —

Matched citations: H.R.1414

S. 705119th Congress

Innovation in Pediatric Drugs Act of 2025

2025 · first_quarter · Firm: NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD)

Open original LDA filing ↗

Cited source text and reported amounts

Pharmaceutical issues impacting patients with rare diseases. Orphan Drug Act. Prescription Drug User Fee Act (PDUFA) Reauthorization. User Fee Agreements. RARE Act. Inflation Reduction Act Implementation. PRV Reauthorization. Accelerated Approval. S.705: Innovation in Pediatric Drugs Act of 2025. H.R.1414: Camerons Law. Promising Pathways Act 2.0.

Client expense: $50,000 · Firm income: —

Matched citations: S.705

H.R. 4758118th Congress

Accelerating Kids’ Access to Care Act

2024 · fourth_quarter · Firm: NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD)

Open original LDA filing ↗

Cited source text and reported amounts

Rare Disease Initiatives. Affordable Care Act (ACA) Issues and Enhancements. Telehealth. Priority Review Voucher Reauthorization. Lab-developed tests. H.R.4758/S.2372: Accelerating Kids Access to Care Act.

Client expense: $50,000 · Firm income: —

Matched citations: H.R.4758

S. 2372118th Congress

Accelerating Kids’ Access to Care Act

2024 · fourth_quarter · Firm: NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD)

Open original LDA filing ↗

Cited source text and reported amounts

Rare Disease Initiatives. Affordable Care Act (ACA) Issues and Enhancements. Telehealth. Priority Review Voucher Reauthorization. Lab-developed tests. H.R.4758/S.2372: Accelerating Kids Access to Care Act.

Client expense: $50,000 · Firm income: —

Matched citations: S.2372

H.R. 6892118th Congress

Medical Nutrition Equity Act of 2023

2024 · third_quarter · Firm: NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD)

Open original LDA filing ↗

Cited source text and reported amounts

Rare Disease Initiatives. Newborn Screening. Affordable Care Act (ACA) Issues and Enhancements. Step Therapy. Telehealth. Priority Review Voucher Reauthorization. H.R.6892: Medical Nutrition Equity Act of 2023.

Client expense: $60,000 · Firm income: —

Matched citations: H.R.6892

H.R. 7383118th Congress

RARE Act

2024 · third_quarter · Firm: NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD)

Open original LDA filing ↗

Cited source text and reported amounts

Pharmaceutical issues impacting patients with rare diseases. Orphan Drug Act. H.R.7383/S.1214: RARE Act. Inflation Reduction Act Implementation. PRV Reauthorization. Lab-developed tests.

Client expense: $60,000 · Firm income: —

Matched citations: H.R.7383

S. 1214118th Congress

RARE Act

2024 · third_quarter · Firm: NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD)

Open original LDA filing ↗

Cited source text and reported amounts

Pharmaceutical issues impacting patients with rare diseases. Orphan Drug Act. H.R.7383/S.1214: RARE Act. Inflation Reduction Act Implementation. PRV Reauthorization. Lab-developed tests.

Client expense: $60,000 · Firm income: —

Matched citations: S.1214

H.R. 4408118th Congress

Promising Pathway Act

2024 · second_quarter · Firm: NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD)

Open original LDA filing ↗

Cited source text and reported amounts

Pharmaceutical issues impacting patients with rare diseases. Orphan Drug Act. H.R.7383/S.1214: RARE Act. Inflation Reduction Act Implementation. H.R.4408/S.1906: Promising Pathway Act (PPA). Lab-developed tests (LDTs) and genetic testing access. PRV Reauthorization.

Client expense: $70,000 · Firm income: —

Matched citations: H.R.4408

H.R. 4408118th Congress

Promising Pathway Act

2024 · second_quarter · Firm: NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD)

Open original LDA filing ↗

Cited source text and reported amounts

Rare Disease Initiatives. Telehealth. Priority Review Voucher Reauthorization. H.R.4408/S.1906: Promising Pathway Act (PPA).

Client expense: $70,000 · Firm income: —

Matched citations: H.R.4408

H.R. 4758118th Congress

Accelerating Kids’ Access to Care Act

2024 · second_quarter · Firm: NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD)

Open original LDA filing ↗

Cited source text and reported amounts

Medicare / Medicaid issues impacting patients with rare diseases. H.R.4758/S.2372: Accelerating Kids Access to Care Act. Inflation Reduction Act Implementation.

Client expense: $70,000 · Firm income: —

Matched citations: H.R.4758

H.R. 7383118th Congress

RARE Act

2024 · second_quarter · Firm: NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD)

Open original LDA filing ↗

Cited source text and reported amounts

Pharmaceutical issues impacting patients with rare diseases. Orphan Drug Act. H.R.7383/S.1214: RARE Act. Inflation Reduction Act Implementation. H.R.4408/S.1906: Promising Pathway Act (PPA). Lab-developed tests (LDTs) and genetic testing access. PRV Reauthorization.

Client expense: $70,000 · Firm income: —

Matched citations: H.R.7383

S. 1214118th Congress

RARE Act

2024 · second_quarter · Firm: NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD)

Open original LDA filing ↗

Cited source text and reported amounts

Pharmaceutical issues impacting patients with rare diseases. Orphan Drug Act. H.R.7383/S.1214: RARE Act. Inflation Reduction Act Implementation. H.R.4408/S.1906: Promising Pathway Act (PPA). Lab-developed tests (LDTs) and genetic testing access. PRV Reauthorization.

Client expense: $70,000 · Firm income: —

Matched citations: S.1214

S. 1906118th Congress

Promising Pathway Act

2024 · second_quarter · Firm: NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD)

Open original LDA filing ↗

Cited source text and reported amounts

Pharmaceutical issues impacting patients with rare diseases. Orphan Drug Act. H.R.7383/S.1214: RARE Act. Inflation Reduction Act Implementation. H.R.4408/S.1906: Promising Pathway Act (PPA). Lab-developed tests (LDTs) and genetic testing access. PRV Reauthorization.

Client expense: $70,000 · Firm income: —

Matched citations: S.1906

S. 1906118th Congress

Promising Pathway Act

2024 · second_quarter · Firm: NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD)

Open original LDA filing ↗

Cited source text and reported amounts

Rare Disease Initiatives. Telehealth. Priority Review Voucher Reauthorization. H.R.4408/S.1906: Promising Pathway Act (PPA).

Client expense: $70,000 · Firm income: —

Matched citations: S.1906

S. 2372118th Congress

Accelerating Kids’ Access to Care Act

2024 · second_quarter · Firm: NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD)

Open original LDA filing ↗

Cited source text and reported amounts

Medicare / Medicaid issues impacting patients with rare diseases. H.R.4758/S.2372: Accelerating Kids Access to Care Act. Inflation Reduction Act Implementation.

Client expense: $70,000 · Firm income: —

Matched citations: S.2372

H.R. 2940118th Congress

PASTEUR Act

2024 · first_quarter · Firm: NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD)

Open original LDA filing ↗

Cited source text and reported amounts

Rare Disease Initiatives. Affordable Care Act (ACA) Issues and Enhancements. H.R.6892: Medical Nutrition Equity Act of 2023. H.R.2940/S.1355: PASTEUR Act. March-in Rights.

Client expense: $60,000 · Firm income: —

Matched citations: H.R.2940

H.R. 6892118th Congress

Medical Nutrition Equity Act of 2023

2024 · first_quarter · Firm: NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD)

Open original LDA filing ↗

Cited source text and reported amounts

Rare Disease Initiatives. Affordable Care Act (ACA) Issues and Enhancements. H.R.6892: Medical Nutrition Equity Act of 2023. H.R.2940/S.1355: PASTEUR Act. March-in Rights.

Client expense: $60,000 · Firm income: —

Matched citations: H.R.6892

H.R. 7383118th Congress

RARE Act

2024 · first_quarter · Firm: NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD)

Open original LDA filing ↗

Cited source text and reported amounts

Pharmaceutical issues impacting patients with rare diseases. Orphan Drug Act. Prescription Drug User Fee Act (PDUFA) Reauthorization. H.R.7383/S.1214: RARE Act. Inflation Reduction Act Implementation. Rare Pediatric Disease Priority Review Vouchers (RDP-PRV). Pediatric Study Requirements. Promising Pathway Act (PPA). Lab-developed tests (LDTs) and genetic testing access.

Client expense: $60,000 · Firm income: —

Matched citations: H.R.7383

S. 1214118th Congress

RARE Act

2024 · first_quarter · Firm: NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD)

Open original LDA filing ↗

Cited source text and reported amounts

Pharmaceutical issues impacting patients with rare diseases. Orphan Drug Act. Prescription Drug User Fee Act (PDUFA) Reauthorization. H.R.7383/S.1214: RARE Act. Inflation Reduction Act Implementation. Rare Pediatric Disease Priority Review Vouchers (RDP-PRV). Pediatric Study Requirements. Promising Pathway Act (PPA). Lab-developed tests (LDTs) and genetic testing access.

Client expense: $60,000 · Firm income: —

Matched citations: S.1214

S. 1355118th Congress

PASTEUR Act of 2023

2024 · first_quarter · Firm: NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD)

Open original LDA filing ↗

Cited source text and reported amounts

Rare Disease Initiatives. Affordable Care Act (ACA) Issues and Enhancements. H.R.6892: Medical Nutrition Equity Act of 2023. H.R.2940/S.1355: PASTEUR Act. March-in Rights.

Client expense: $60,000 · Firm income: —

Matched citations: S.1355

S. 1214118th Congress

RARE Act

2023 · fourth_quarter · Firm: NATIONAL ORGANIZATION FOR RARE DISORDERS INC (NORD)

Open original LDA filing ↗

Cited source text and reported amounts

Pharmaceutical issues impacting patients with rare diseases. Orphan Drug Act. Prescription Drug User Fee Act (PDUFA) Reauthorization. User Fee Agreements. S.1214: RARE Act. Inflation Reduction Act Implementation. Pediatric Review Vouchers.

Client expense: $30,000 · Firm income: —

Matched citations: S.1214

Source: Senate LDA