Organisation paid for research Program year 2025 Source: CMS Open Payments

Rare Disease Research LLC

Neither a doctor nor a teaching hospital

Research payments

$9,368,600

862 payments

Through program year 2025, Rare Disease Research LLC is reported as receiving $9,368,600 in research payments, across 862 payments.

By program year

7 rows

Year	Kind	Amount	Payments
2025	Research	$1,637,331	211
2024	Research	$1,762,004	194
2023	Research	$1,974,223	176
2022	Research	$1,349,845	172
2021	Research	$1,239,577	28
2020	Research	$653,512	40
2019	Research	$752,108	41

Breakdown

Who paid Research payments · program years 2019–2025

Sarepta Therapeutics, Inc. $6,380,668 364 payments
Takeda Pharmaceuticals U.S.A., Inc. $1,187,130 132 payments
PTC Therapeutics, Inc. $423,393 62 payments
AbbVie, Inc. $226,306 94 payments
Ultragenyx Pharmaceutical Inc. $174,527 27 payments
Roche Products Limited $155,118 11 payments
Biohaven Pharmaceutical Holding Company Ltd. $123,196 25 payments
Harmony Biosciences LLC $122,404 33 payments
NS Pharma, Inc. $114,145 32 payments
Pfizer Inc. $82,815 26 payments

Studies the money was for Research payments · program years 2019–2025

5051-201 $1,507,670 67 payments
4658-402 $1,489,905 186 payments
Srp-5051-201 $965,999 17 payments
A Study of Intrathecal Shp611 in Participants With Late Infantile Metachromatic Leukodystrophy $958,457 60 payments
4045-301 $617,561 12 payments
Phase IV Golodirsen $595,541 4 payments
4045-301 $353,311 24 payments
An Open-Label Study Evaluating the Safety and Pharmacokinetics of Ataluren in Children From ?6 Months to <2 Years of Age With Nonsense Mutation Duchenne Muscular Dystrophy $282,568 28 payments
Sponsored Research Agreement - Golodirsen $246,284 1 payment
Study to Assess Efficacy Safety and Tolerability in Ambulatory Boys With DMD $198,380 14 payments

What the money was spent on Research payments · program years 2019–2025

Patient care $3,664,403 164 payments
Other $512,376 20 payments

Only reported on some payments, and a payment can report more than one category, so these amounts overlap.

What you are looking at

A noncovered recipient is an organisation paid for research that is neither an individual clinician nor a teaching hospital — typically a contract research organisation, a foundation or a trial site network. They receive 81% of all reported research money, which is why they appear here at all.