Grants paid by National Organization for Rare Disorders Inc
EIN 13-3223946 · Danbury, MA · Form 990, Schedule I
National Organization for Rare Disorders Inc of Danbury, MA (EIN 13-3223946) reported 59 grants paid totaling $1,336,549 to 42 recipients in tax years 2019–2025, on Form 990, Schedule I. Derived from IRS e-file data, dataset version 2026.09.0, built 2026-09-03.
Grants paid
$1,336,549
59 grants
Recipients
42
distinct organizations
Tax years
2019–2025
7 filings in the corpus
By tax year
| Tax year | Grants paid | Amount paid | Approved for future |
|---|---|---|---|
| 2019 | 10 | $222,733 | — |
| 2020 | 14 | $157,237 | — |
| 2021 | 14 | $420,936 | — |
| 2022 | 6 | $155,487 | — |
| 2023 | 9 | $238,574 | — |
| 2024 | 2 | $40,000 | — |
| 2025 | 4 | $101,582 | — |
Top recipients
The 42 recipients receiving the most from National Organization for Rare Disorders Inc, by grants paid, out of 42 distinct recipients.
| Recipient | Match | Location | Grants | Total paid | Latest year |
|---|---|---|---|---|---|
| Trustees of the University of Pennsylvania 23-1352685 | A | Philadelphia, PA | 2 | $89,432 | 2025 |
| Ann & Robert H Lurie Children's Hospital of Chicago 36-2170833 | A | Chicago, IL | 2 | $77,975 | 2023 |
| The University of Chicago 36-2177139 | A | Chicago, IL | 2 | $76,000 | 2023 |
| Wake Forest University Health Sciences 22-3849199 | A | Winstonsalem, NC | 3 | $75,000 | 2023 |
| Children's Hospital of Philadelphia 23-1352166 | A | Philadelphia, PA | 3 | $63,099 | 2024 |
| University of South Carolina 57-6001153 | A | Columbia, SC | 2 | $60,487 | 2022 |
| Regents of the University of California 95-6006143 | A | Los Angeles, CA | 2 | $60,487 | 2025 |
| Johns Hopkins University 83-1496989 | A | Baltimore, MD | 1 | $55,000 | 2019 |
| Brigham & Womens Hospital - Research 04-2312909 | A | Boston, MA | 2 | $50,000 | 2021 |
| Cincinnati Children's Hospital Medical Center 31-0833936 | A | Cincinnati, OH | 2 | $50,000 | 2023 |
| Mayo Clinic Rochester 41-6011702 | A | Minneapolis, MN | 1 | $50,000 | 2022 |
| The University of Sheffield 98-0469910 | A | Sheffield | 1 | $49,998 | 2021 |
| University of Pittsburgh 25-0965591 | A | Pittsburgh, PA | 2 | $45,000 | 2021 |
| Duke University Office of Sponsored Programs | U | Charlotte, NC | 2 | $42,500 | 2025 |
| Johns Hopkins University 52-0595110 | A | Baltimore, MD | 1 | $40,000 | 2021 |
| The Regents of the University of California 94-6036493 | A | San Francisco, CA | 2 | $40,000 | 2022 |
| Baylor College of Medicine 74-1613878 | A | Houston, TX | 2 | $32,500 | 2022 |
| Duke University 56-0532129 | A | Durham, NC | 1 | $25,000 | 2019 |
| Drexel University 23-1352630 | A | Philadelphia, PA | 1 | $25,000 | 2024 |
| Henry M Jackson Foundation for Advancement of Military Medicine Inc 52-1317896 | A | Bethesda, MD | 1 | $25,000 | 2021 |
| Nyu School of Medicine 13-5562308 | A | New York, NY | 1 | $24,963 | 2021 |
| Boston Childrens Hospital 04-2774441 | A | Boston, MA | 1 | $24,800 | 2021 |
| Oslo University Hospital 98-1206495 | A | Olso | 1 | $23,800 | 2021 |
| University Health Network 11-9259505 | A | Torornto, ONTARIO | 1 | $21,250 | 2021 |
| Regents of the University of Colorado 84-6000555 | A | Aurora, CO | 1 | $17,275 | 2025 |
| University of Nebraska - Lincoln 26-3670790 | A | Lincoln, NE | 1 | $15,500 | 2019 |
| Fox Chase Cancer Center 23-2003072 | A | Philadelphia, PA | 1 | $15,000 | 2019 |
| Cure Cmd 26-2640975 | A | Lakewood, CA | 1 | $14,973 | 2020 |
| Champ1 Research Foundation 83-0516268 | A | Spring Hillfl, FL | 2 | $14,890 | 2020 |
| University of Florida 45-3450561 | A | Ft Myers, FL | 1 | $14,733 | 2019 |
| Life Raft Group 82-0547746 | A | Wayne, NJ | 1 | $14,500 | 2020 |
| United Msd Foundation Inc 81-3669443 | A | Ocean Springs, MS | 2 | $13,650 | 2020 |
| Friedrick's Ataxia Research Alliance 52-2122720 | A | Downington, PA | 1 | $13,000 | 2020 |
| H Lee Moffitt Cancer Center & Research Inst 59-2451713 | A | Tampa, FL | 1 | $12,500 | 2023 |
| H Lee Moffitt Cancer Center & Research Institute 59-3238634 | A | Tampa, FL | 1 | $12,500 | 2022 |
| The Global Foundation for Peroxisonal Disorders 27-3646193 | A | Tulsa, OK | 1 | $10,900 | 2020 |
| The Cute Syndrome Foundation Inc 46-2669906 | A | Troy, NY | 1 | $9,346 | 2020 |
| Tatton Brown Rahman Syndrome Community 81-2216511 | A | Stanfordville, NY | 1 | $9,000 | 2020 |
| National Pku Alliance 26-2849140 | A | Eau Claire, WI | 1 | $8,718 | 2020 |
| Histiocytosis Association 22-2827069 | A | Pitman, NJ | 1 | $6,773 | 2020 |
| Gbscidp Foundation 22-2474769 | A | Conshohocken, PA | 1 | $6,000 | 2020 |
| (name not stated) | U | 1 | $0 | 2019 |
Match tier: A Reported EIN · B Exact name and place · C Strong name match · D Probable name match · U Unresolved. Tiers C and D are inferred, not reported; see how matching works.
Every grant
All 59 grant rows this organization reported, most recent first.
| Tax year | Recipient | Match | Amount | Type | Purpose | Source filing |
|---|---|---|---|---|---|---|
| 2025 | Trustees of the University of Pennsylvania Philadelphia, PA | A | $41,807 | paid | TRUSTEES OF THE UNIVERSITY OF PENNSYLVANIA | 202621489349300522 |
| 2025 | Regents Regents of the University of California Los Angeles, CA | A | $25,000 | paid | SEED GRANT AWARD - ACPMP | 202621489349300522 |
| 2025 | Duke University Office of Sponsored Programs Charlotte, NC | U | $17,500 | paid | AVM RESEARCH AT DUKE UNIVERSITY | 202621489349300522 |
| 2025 | Regents of the University of Colorado Aurora, CO | A | $17,275 | paid | BILIARY ARTESIA SEED GRANT AWARD | 202621489349300522 |
| 2024 | Drexel University Philadelphia, PA | A | $25,000 | paid | FINAL PAYMENT FOR ACPMP RESEARCH GRANT NORD ID 15005 | 202521609349300767 |
| 2024 | Children's Hospital of Philadelphia Philadelphia, PA | A | $15,000 | paid | FIRST PAYMENT OF 2 FOR MMIHS RESEARCH | 202521609349300767 |
| 2023 | Trustees of the University of Pennsylvania Philadelphia, PA | A | $47,625 | paid | BILIARY ATRESIA RESEARCH | 202421529349300917 |
| 2023 | Ann & Robert H Lurie Children's Hospital of Chicago Chicago, IL | A | $30,350 | paid | BILIARY ATRESIA GRANT AWARD - LURIE CHILDREN'S | 202421529349300917 |
| 2023 | The University of Chicago Chicago, IL | A | $25,000 | paid | RESEARCH GRANT AWARD | 202421529349300917 |
| 2023 | Wake Forest University Health Sciences Winstonsalem, NC | A | $25,000 | paid | ACPMP SEED FUNDING AWARD - WAKE FOREST | 202421529349300917 |
| 2023 | Cincinnati Children's Hospital Medical Center Cincinnati, OH | A | $25,000 | paid | ACDMPV RESEARCH AT CHILDREN'S HOSPITAL | 202421529349300917 |
| 2023 | Duke University Office of Sponsored Programs Charlotte, NC | U | $25,000 | paid | RESEARCH GRANT AWARD - MALONIC ACIDURIA - PROF. FILIANO | 202421529349300917 |
| 2023 | Wake Forest University Health Sciences Winstonsalem, NC | A | $25,000 | paid | ACPMP GRANT AWARD WFUHS | 202421529349300917 |
| 2023 | Children's Hospital of Philadelphia Philadelphia, PA | A | $23,099 | paid | NORSE/FIRES RESEARCH GRANT AWARD | 202421529349300917 |
| 2023 | H Lee Moffitt Cancer Center & Research Inst Tampa, FL | A | $12,500 | paid | ACPMP RESEARCH GRANT AWARD | 202421529349300917 |
| 2022 | Mayo Clinic Rochester Minneapolis, MN | A | $50,000 | paid | NORSE RESEARCH GRANT AWARD | 202341319349302394 |
| 2022 | Regents of the University of California Los Angeles, CA | A | $35,487 | paid | RESEARCH GRANT | 202341319349302394 |
| 2022 | Cincinnati Children's Hospital Medical Center Cincinnati, OH | A | $25,000 | paid | NEHI GRANT AWARD | 202341319349302394 |
| 2022 | University of South Carolina Columbia, SC | A | $25,000 | paid | ACPMP RESEARCH GRANT AWARD | 202341319349302394 |
| 2022 | H Lee Moffitt Cancer Center & Research Institute Tampa, FL | A | $12,500 | paid | ACPMP RESEARCH GRANT AWARD | 202341319349302394 |
| 2022 | Baylor College of Medicine Houston, TX | A | $7,500 | paid | RESEARCH GRANT | 202341319349302394 |
| 2021 | The University of Chicago Chicago, IL | A | $51,000 | paid | RESEARCH GRANT | 202202719349300210 |
| 2021 | The University of Sheffield Sheffield | A | $49,998 | paid | RESEARCH GRANT | 202202719349300210 |
| 2021 | Ann & Robert H Lurie Children's Hospital of Chicago Chicago, IL | A | $47,625 | paid | RESEARCH GRANT | 202202719349300210 |
| 2021 | Johns Hopkins University Baltimore, MD | A | $40,000 | paid | RESEARCH GRANT | 202202719349300210 |
| 2021 | Henry M Jackson Foundation for Advancement of Military Medicine Inc Bethesda, MD | A | $25,000 | paid | RESEARCH GRANT | 202202719349300210 |
| 2021 | Children's Hospital of Philadelphia Philadelphia, PA | A | $25,000 | paid | RESEARCH GRANT | 202202719349300210 |
| 2021 | University of South Carolina Columbia, SC | A | $25,000 | paid | RESEARCH GRANT | 202202719349300210 |
| 2021 | Brigham & Womens Hospital - Research Boston, MA | A | $25,000 | paid | RESEARCH GRANT | 202202719349300210 |
| 2021 | Nyu School of Medicine New York, NY | A | $24,963 | paid | RESEARCH GRANT | 202202719349300210 |
| 2021 | Boston Childrens Hospital Boston, MA | A | $24,800 | paid | RESEARCH GRANT | 202202719349300210 |
| 2021 | Oslo University Hospital Olso | A | $23,800 | paid | RESEARCH GRANT | 202202719349300210 |
| 2021 | University of Pittsburgh Pittsburgh, PA | A | $22,500 | paid | RESEARCH GRANT | 202202719349300210 |
| 2021 | University Health Network Torornto, ONTARIO | A | $21,250 | paid | RESEARCH GRANT | 202202719349300210 |
| 2021 | The Regents of the University of California San Francisco, CA | A | $15,000 | paid | RESEARCH GRANT | 202202719349300210 |
| 2020 | Regents of the University of California Los Angeles, CA | A | $35,487 | paid | RESEARCH GRANT | 202121979349300507 |
| 2020 | Cure Cmd Lakewood, CA | A | $14,973 | paid | MEMBERSHIP COVID-19 GRANT | 202121979349300507 |
| 2020 | Life Raft Group Wayne, NJ | A | $14,500 | paid | MEMBERSHIP COVID-19 GRANT | 202121979349300507 |
| 2020 | Friedrick's Ataxia Research Alliance Downington, PA | A | $13,000 | paid | MEMBERSHIP COVID-19 GRANT | 202121979349300507 |
| 2020 | The Global Foundation for Peroxisonal Disorders Tulsa, OK | A | $10,900 | paid | MEMBERSHIP COVID-19 GRANT | 202121979349300507 |
| 2020 | Champ1 Research Foundation Spring Hillfl, FL | A | $9,800 | paid | MEMBERSHIP COVID-19 GRANT | 202121979349300507 |
| 2020 | The Cute Syndrome Foundation Inc Troy, NY | A | $9,346 | paid | MEMBERSHIP COVID-19 GRANT | 202121979349300507 |
| 2020 | Tatton Brown Rahman Syndrome Community Stanfordville, NY | A | $9,000 | paid | MEMBERSHIP COVID-19 GRANT | 202121979349300507 |
| 2020 | National Pku Alliance Eau Claire, WI | A | $8,718 | paid | MEMBERSHIP COVID-19 GRANT | 202121979349300507 |
| 2020 | United Msd Foundation Inc Ocean Springs, MS | A | $8,600 | paid | MEMBERSHIP COVID-19 GRANT | 202121979349300507 |
| 2020 | Histiocytosis Association Pitman, NJ | A | $6,773 | paid | MEMBERSHIP COVID-19 GRANT | 202121979349300507 |
| 2020 | Gbscidp Foundation Conshohocken, PA | A | $6,000 | paid | MEMBERSHIP COVID-19 GRANT | 202121979349300507 |
| 2020 | Champ1 Research Foundation Spring Hillfl, FL | A | $5,090 | paid | MEMBERSHIP COVID-19 GRANT | 202121979349300507 |
| 2020 | United Msd Foundation Inc Ocean Springs, MS | A | $5,050 | paid | MEMBERSHIP COVID-19 GRANT | 202121979349300507 |
| 2019 | Johns Hopkins University Baltimore, MD | A | $55,000 | paid | RESEARCH GRANT. | 202032179349300718 |
| 2019 | Duke University Durham, NC | A | $25,000 | paid | RESEARCH GRANT. | 202032179349300718 |
| 2019 | Wake Forest University Health Sciences Winstonsalem, NC | A | $25,000 | paid | RESEARCH GRANT. | 202032179349300718 |
| 2019 | Baylor College of Medicine Houston, TX | A | $25,000 | paid | RESEARCH GRANT. | 202032179349300718 |
| 2019 | Brigham & Womens Hospital Somerville, MA | A | $25,000 | paid | RESEARCH GRANT. | 202032179349300718 |
| 2019 | University of Pittsburgh Pittsburg, PA | A | $22,500 | paid | RESEARCH GRANT. | 202032179349300718 |
| 2019 | University of Nebraska - Lincoln Lincoln, NE | A | $15,500 | paid | RESEARCH GRANT. | 202032179349300718 |
| 2019 | Fox Chase Cancer Center Philadelphia, PA | A | $15,000 | paid | RESEARCH GRANT. | 202032179349300718 |
| 2019 | University of Florida Ft Myers, FL | A | $14,733 | paid | RESEARCH GRANT. | 202032179349300718 |
| 2019 | (name not stated) | U | $0 | paid | RESEARCH GRANT. | 202032179349300718 |
Match tier: A Reported EIN · B Exact name and place · C Strong name match · D Probable name match · U Unresolved. Tiers C and D are inferred, not reported; see how matching works.
Recipient matching for this dataset version has not yet completed its independent precision check. Tier A rows carry the EIN the filer reported; tiers B–D are the matcher's inference and should be read as leads until the check is published on the methodology page.
Source filings
Every figure above is traceable to one of these IRS e-file returns by its OBJECT_ID.
| Form | Tax year | Period end | Filed | Schema | IRS OBJECT_ID |
|---|---|---|---|---|---|
| 990 | 2025 | 2025-12-31 | not stated | 2025v4.1 | 202621489349300522 |
| 990 | 2024 | 2024-12-31 | not stated | 2024v5.1 | 202521609349300767 |
| 990 | 2023 | 2023-12-31 | not stated | 2023v5.0 | 202421529349300917 |
| 990 | 2022 | 2022-12-31 | not stated | 2022v5.0 | 202341319349302394 |
| 990 | 2021 | 2021-12-31 | not stated | 2021v4.2 | 202202719349300210 |
| 990 | 2020 | 2020-12-31 | not stated | 2020v4.1 | 202121979349300507 |
| 990 | 2019 | 2019-12-31 | not stated | 2019v5.1 | 202032179349300718 |
Derived from IRS Form 990 e-file XML; recipient identities from the IRS Exempt Organizations Business Master File. Dataset version 2026.09.0, built 2026-09-03. The same rows as Parquet: manifest; as JSON: /api/funders/133223946.json.
The same organization elsewhere in the program: exempt status and filing health · federal awards · grant guidance · open opportunities.
This is informational only, derived from public data on the dates shown. It is not an eligibility determination, and not legal, tax, or accounting advice. Verify against the official source before relying on it.