National Organization for Rare
Quincy, Massachusetts · EIN 133223946 · Private foundation
National Organization for Rare is a private foundation based in Quincy, Massachusetts. Its most recent IRS Form 990-PF reports $40.7M in grants paid and $52.8M in total assets. Bespoke Grants tracks 60 individual grants from this funder — $1.3M awarded across 2016–2024 — including its support for health care. Below is its full funding profile.
What National Organization for Rare funds
National Organization for Rare's giving carries a documented focus on health care.
Populations it has supported include children.
Grant history
The largest grants Bespoke Grants has on record for National Organization for Rare, by amount:
| Recipient | Location | Grant | Year |
|---|---|---|---|
| University of Colorado Denver VARIANT NONKETOTIC HYPERGLYCINEMIA: FROM GENETIC DIAGNOSIS TO CURATIVE TREATMENT AND ROLE OF PERICYTES AND PLATELET-DERIVED GROWTH FACTOR-BE | Denver, CO | $64K | 2016 |
| Johns Hopkins University RESEARCH GRANT. | Baltimore, MD | $55K | 2019 |
| Regents of University of California STEM CELL DERIVED HUMAN THYMUS FOR THE STUDY OF APS1 | San Francisco, CA | $50K | 2017 |
| University of North Carolina at Chapel Hill THYMIC TRANSPLANTATION FOR APS TYPE 1 | Alanta, GA | $50K | 2017 |
| Mayo Clinic Rochester NORSE RESEARCH GRANT AWARD | Minneapolis, MN | $50K | 2022 |
| Trustees of the University of Pennsylvania BILIARY ATRESIA RESEARCH | Philadelphia, PA | $48K | 2023 |
| University of Colorado Denver ROLE OF PERICYCLES AND PLATELET-DERIVED GROWTH FACTOR-BETA SIGNALING IN THE PATHOGENESIS OF ALVEOLAR CAPILLARY DYSPLASIA WITH MISALIGNMENT O | Aurora, CO | $47K | 2017 |
| Regents of University of California SEQUENCING THE CANCER GENOME OF MUCINOUS ADENCARCINOMA OF THE APPENDIX AND TARGETING CORE SIGNALING NETWORKS IN MUCINOUS ADENOCARCINOMA OF T | Oakland, CA | $41K | 2016 |
| Creighton University BIOLOGIC FOUNDATIONS FOR NEW TREATMENT OPTIONSAND 2014 RESEARCH GRANT: PI GOVINDARAJAN ~ 'TARGETED PARALLEL PATHWAY BLOCKADE AS A TREATMENT | Omaha, NE | $38K | 2017 |
| Regents of the University of California RESEARCH GRANT | Los Angeles, CA | $35K | 2020 |
| Regents of the University of California RESEARCH GRANT | Los Angeles, CA | $35K | 2022 |
| Ann & Robert H Lurie Children's Hospital of Chicago BILIARY ATRESIA GRANT AWARD - LURIE CHILDREN'S | Chicago, IL | $30K | 2023 |
| The University of Chicago RESEARCH GRANT AWARD | Chicago, IL | $25K | 2023 |
| Cincinnati Children's Hospital Medical Center ACDMPV RESEARCH AT CHILDREN'S HOSPITAL | Cincinnati, OH | $25K | 2023 |
| Duke University Office of Sponsored Programs RESEARCH GRANT AWARD - MALONIC ACIDURIA - PROF. FILIANO | Charlotte, NC | $25K | 2023 |
National Organization for Rare giving by year
Total grants Bespoke Grants has indexed for each filing year:
How to apply for funding from National Organization for Rare
National Organization for Rare's public IRS filing does not spell out a formal application process. Foundations of this size often give primarily to organizations they already know, so a concise letter of inquiry or a warm introduction is usually the best first contact — not a full proposal. You can review the foundation directly at rarediseases.org.
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Match my nonprofit to funders →Frequently asked questions about National Organization for Rare
- Does National Organization for Rare accept grant applications?
- National Organization for Rare's public filing does not specify an application process. A brief letter of inquiry or a warm introduction is usually the best first step with a private foundation of this size.
- What does National Organization for Rare fund?
- National Organization for Rare's grants focus on health care. Recent recipients include University of Colorado Denver, Johns Hopkins University, Regents of University of California. Its full grant history is listed above.
- How much does National Organization for Rare give in grants?
- National Organization for Rare reported $40.7M in grants in its most recent IRS filing (FY2020). Across all years in our data it has awarded $1.3M over 60 grants.
- Where is National Organization for Rare located?
- National Organization for Rare is based in Quincy, Massachusetts. Its IRS employer identification number (EIN) is 133223946.
- How can I find foundations similar to National Organization for Rare?
- Bespoke Grants matches your nonprofit against 225,000+ foundations like National Organization for Rare, ranking each by how well it fits your mission, location, and budget — with the reasoning shown. It is free to search.
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