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

Rare Disease Research, LLC

Neither a doctor nor a teaching hospital

Research payments

$6,707,886

575 payments

Through program year 2025, Rare Disease Research, LLC is reported as receiving $6,707,886 in research payments, across 575 payments.

By program year

5 rows

Year	Kind	Amount	Payments
2025	Research	$1,045,377	50
2024	Research	$339,409	69
2023	Research	$977,652	111
2022	Research	$2,349,523	328
2021	Research	$1,995,926	17

Breakdown

Who paid Research payments · program years 2021–2025

Applied Therapeutics, inc. $5,216,904 440 payments
Ultragenyx Pharmaceutical Inc. $1,350,667 113 payments
Harmony Biosciences LLC $92,355 11 payments
Genentech, Inc. $47,961 11 payments

Studies the money was for Research payments · program years 2021–2025

Clinical Benefit Safety PK and PD Study of AT-007 in Pediatric Subjects With Classic Galactosemia $2,257,168 317 payments
Clinical Benefit, Safety, PK and PD Study of AT-007 in Pediatric Subjects With Classic Galactosemia $1,995,926 17 payments
At-007-1002 $963,810 106 payments
Gtx-102-Cl301 $828,919 22 payments
Gtx-102-001 $321,166 56 payments
Gtx-102-Cl302 $188,031 32 payments
Safety and Efficacy of Pitolisant on Excessive Daytime Sleepiness and Other Non-Muscular Symptoms in Patients With Myotonic Dystrophy Type 1 $92,355 11 payments
Long Term Follow Up Study of Patients With Spinal Muscular Atrophy Receiving Risdiplam Treatment $47,961 11 payments
Gtx-102-Cl301 $12,550 3 payments

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.