HEIDI ROSS

NATIONAL ORGANIZATION FOR RARE DISORDERS, INC. (NORD) · Washington, DC · registered since 2024

Registered · LDAActive

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At a glance

Registered since

2024

Senate LDA system

Clients

last 3 years

Filings

7 agencies contacted

Activity

filings by quarter

Works on

Health Issues 5 Medicare/Medicaid 5 Pharmacy 5 Budget/Appropriations 1

Background

Career

NATIONAL ORGANIZATION FOR RARE DISORDERS, INC. (NORD)

Washington, DC

2024 - present

Specific issues

Appropriations impacting patients with rare diseases. National Institutes of Health (NIH) NCATS Appropriations.

Budget/Appropriations · 2025 Q1

Medicare / Medicaid issues impacting patients with rare diseases. Inflation Reduction Act Implementation.

Medicare/Medicaid · 2025 Q1

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.

Pharmacy · 2025 Q1

Rare Disease Initiatives. Affordable Care Act (ACA) Issues and Enhancements. Telehealth. Priority Review Voucher Reauthorization. Accelerated Approval. Newborn Screening.

Health Issues · 2025 Q1

Pharmaceutical issues impacting patients with rare diseases. Orphan Drug Act. Inflation Reduction Act Implementation. PRV Reauthorization.

Pharmacy · 2024 Q4

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.

Health Issues · 2024 Q4