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National Organization for Rare Disorders Inc at a glanceAlso receives grants: funding profile →

· Public charity

National Organization for Rare Disorders Inc

Nord strives to improve the health and well-being of people with rare diseases by driving advances in care, research, and policy.

$22M
Granted FY2025still arriving
4
Grants FY2025still arriving
4
States reached
$42k
Largest
01What it fundsRead
02The needRead
03Its granteesRead
04Its fieldRead
01What it funds
01100% classified

What it funded, over time

Every grant placed by its stated purpose and the recipient’s mission, by year, FY2017 to 2025.

Health$1.3MScience & Tech$329kEducation$205k
02FY2025 · 4 grants

Where the money goes

Grants by size, and the largest recipients.

How this is measured
The 4 grants below total $101,582, the rows itemized in this filing. The $22,081,890 headline is the total grant expense on the return; the other $21,980,308 is giving the schedule does not break out (grants under the $5,000 itemization floor, grants to individuals, grants on other schedules). Every figure below describes the itemized rows only.
$25,000
Median grant
4
States reached
$67M
Total assets
Largest grants
RecipientAmount
TRUSTEES OF THE UNIVERSITY OF PENNSYLVANIA$41,807
REGENTS REGENTS OF THE UNIVERSITY OF CALIFORNIA$25,000
DUKE UNIVERSITY OFFICE OF SPONSORED PROGRAMS$17,500
REGENTS OF THE UNIVERSITY OF COLORADO$17,275
02The need
03

Does the money reach high-need areas?

Each grant placed by the hardship in its grantee’s ZIP, against the area’s typical level.

show:

Dollar for dollar, its grants (FY17–25) land where the poverty rate runs at 15%, against an area that typically sits at 11%. 85% of its dollars go to grantees based in above-average-need neighborhoods. Most of its grants land in higher-need ZIPs.

area typical 11%BRIGHAM & WOMENS HOSPITAL: $25k → 8%BRIGHAM & WOMENS HOSPITAL - RESEARCH: $25k → 16%CREIGHTON UNIVERSITY: $38k → 12%UNIVERSITY OF NEBRASKA - LINCOLN: $16k → 13%FRIEDRICK'S ATAXIA RESEARCH ALLIANCE: $13k → 6%UNIVERSITY OF PITTSBURGH: $23k → 11%CHILDREN'S HOSPITAL OF PHILADELPHIA: $25k → 22%REGENTS OF THE UNIVERSITY OF CALIFORNIA: $25k → 10%CURE CMD: $15k → 14%NYU SCHOOL OF MEDICINE: $25k → 17%BAYLOR COLLEGE OF MEDICINE: $47k → 16%UNIVERSITY OF SOUTH CAROLINA: $25k → 16%UNIVERSITY OF FLORIDA: $15k → 11%CHAMP1 RESEARCH FOUNDATION: $10k → 12%H LEE MOFFITT CANCER CENTER & RESEARCH INSTITUTE: $13k → 13%DUKE UNIVERSITY: $25k → 11%UNIVERSITY OF COLORADO DENVER: $47k → 10%CINCINNATI CHILDREN'S HOSPITAL MEDICAL CENTER: $25k → 16%NORTHWESTERN UNIVERSITY: $25k → 14%LIFE RAFT GROUP: $15k → 12%HENRY M JACKSON FOUNDATION FOR ADVANCEMENT OF MILITARY MEDICINE: $25k → 8%JOHNS HOPKINS UNIVERSITY: $55k → 19%UNIVERSITY OF PITTSBURGH: $23k → 11%FOX CHASE CANCER CENTER: $15k → 22%BAYLOR COLLEGE OF MEDICINE: $25k → 16%UNIVERSITY OF SOUTH CAROLINA: $25k → 16%H LEE MOFFITT CANCER CENTER & RESEARCH INST: $13k → 13%REGENTS OF THE UNIVERSITY OF COLORADO: $17k → 10%CINCINNATI CHILDREN'S HOSPITAL MEDICAL CENTER: $25k → 16%ANN & ROBERT H LURIE CHILDREN'S HOSPITAL OF CHICAGO: $48k → 14%HENRY M JACKSON FOUNDATION FOR ADVANCEMENT OF MILITARY MEDICINE INC: $25k → 8%JOHNS HOPKINS UNIVERSITY: $40k → 19%THE RESEARCH INSTITUTE OF FOX CHASE CANCER CENTER: $15k → 22%BAYLOR COLLEGE OF MEDICINE: $25k → 16%UNIVERSITY OF SOUTH CAROLINA: $25k → 16%CINCINNATI CHILDREN'S HOSPITAL MEDICAL CENTER: $25k → 16%ANN & ROBERT H LURIE CHILDREN'S HOSPITAL OF CHICAGO: $30k → 14%UNIVERSITY OF MARYLAND BALTIMORE: $24k → 19%TRUSTEES OF THE UNIVERSITY OF PENNSYLVANIA: $48k → 22%NORTHWESTERN UNIVERSITY: $16k → 14%TRUSTEES OF THE UNIVERSITY OF PENNSYLVANIA: $42k → 22%THE UNIVERSITY OF CHICAGO: $51k → 14%DREXEL UNIVERSITY: $25k → 22%THE UNIVERSITY OF CHICAGO: $25k → 14%CHILDREN'S HOSPITAL OF PHILADELPHIA: $23k → 22%CHOP RESEARCH INSTITUTE: $15k → 22%CHILDREN'S HOSPITAL OF PHILADELPHIA: $15k → 22%MONELL CHEMICAL SENSES CENTER: $10k → 22%0%20%40%50%more need →
grant to an above-average-need area below average· circle size = grant amount
How this is measured
Matched: human-services grants are those whose grantee’s IRS cause code is Human Services. Placed by people below the poverty line in the grantee’s ZIP, averaged from the tracts in that ZIP.

Which US states its grants reach

MN
IL
WI
NY
MA
OH
PA
NJ
CA
CO
NE
MD
NC
SC
OK
MS
GA
TX
FL
How this is measured
US grants placed by each grantee’s ZIP, which can differ from where services are delivered. Need from public data (U.S. Census/ACS, CDC PLACES, Eviction Lab, USDA), shown as context about the area, never attributed to the funder’s giving.
04

Where the work is directed

The same grants placed two ways: where each recipient sits, and where its stated purpose sends the money.

About 5% of National Organization for Rare Disorders Inc’s grant dollars are earmarked for a different county than the recipient’s own address.

National Organization for Rare Disorders Inclessmore of its giving
Placed by recipient address · 7.4% directed abroad (not shown)
How this is measured
Recipient view: each grant at its grantee’s ZIP, mapped to a county. Directed view: each grant at the county its stated purpose names, falling back to the recipient’s county when the purpose names no place; US grants only. A county shows only if it carries the top 95% of that view’s dollars. Purposes are read from the funder’s own 990 grant descriptions.
03Its grantees
repeat funding

Who it funds again

Organizations funded in more than one year, against those funded once.

62%of every dollar goes to organizations it has funded before.
$1.0M · 16 repeat orgs$629k to everyone else

16 repeat relationships: 3 still active in FY2025, 13 since wound down.

How the two cohorts compare

Re-uppedFunded once

Organizations

16
30

Total granted

$1.0M
$629k

Median revenue growth · since first grant

+44%
+48%

Still filing today

69%
63%

New vs renewed · share of each year

In FY2025, 100% of grant dollars renewed an existing relationship; $0 went to new ones.

50%100%’17’18’19’20’21’22’23’24’25
RenewedFirst-time

Where new relationships form · theme of each grantee’s first grant

’17’18’19’20’21’22’23’24’25
HealthEducationRecreation & SportsOther
How this is measured
First-time means a grantee’s first year in the filing window; renewed means funded in an earlier year too. The renewed share climbs naturally as a portfolio matures, so the signal is a year that bucks it (a wave of new grantees). The earliest year is left-censored: relationships that predate the data read as new. Theme is the grantee’s IRS cause.

Backed again, and grew

  • BC
    Baylor College of Medicine
    4× · 2017–2022 · $104k · revenue +67%
  • TC
    THE CHILDREN'S HOSPITAL OF PHILADELPHIA
    4× · 2017–2024 · $78k · revenue +88%
  • Ann & Robert H Lurie Children's Hospital of Chicago
    2× · 2021–2023 · $78k · revenue +31%

Funded once

  • JH
    JOHNS HOPKINS GLOBAL III INC
    one grant, 2019 · $55k
  • RO
    REGENTS OF THE UNIVERSITY OF CALIFORNIA
    one grant, 2017 · $50k
  • UO
    UNIVERSITY OF NORTH CAROLINA AT CHAPEL HILL
    one grant, 2017 · $50k
How this is measured

Repeat means funded in two or more distinct years. Growth and survival are read from each grantee’s own subsequent IRS filings.

04Its field

Closest unfunded matches

The nonprofits that most resemble its grantees but are not funded by it, scored along the direction from the rest of the field toward the portfolio. A resemblance in what they say they do, not a recommendation.

1
Fred Hutchinson Cancer Center

Fred hutch cancer center ("fred hutch") unites innovative research and compassionate care to prevent and eliminate cancer and infectious disease. continued on schedule o

Health
2
The Johns Hopkins Hospital

For more than 125 years, the mission of the johns hopkins hospital has been to lead the world in the diagnosis and treatment of disease and to train tomorrow's great physicians, nurses and scientists. above all, we aim to provide the…

Health
3
Hugo W Moser Research Institute At Kennedy Krieger Inc

The hugo w. moser research institute at kennedy krieger, inc. (the "research institute") is an internationally recognized research facility finding answers to problems and injuries that affect a child's developing brain. researchers have…

Science & Tech
4
Sanford Burnham Prebys Medical Discovery Institute

Sanford burnham prebys medical discovery institute's mission is to advance the biomedical sciences by cultivating the next generation of scientific leaders, providing meaningful opportunities for researchers of all backgrounds to learn,…

Health
5
Rush University Medical Center

The mission of Rush is to improve the health of the individuals and diverse communities we serve through the integration of outstanding patient care, education, research and community partnerships.

Health
6
Albany College of Pharmacy and Health Sciences

We educate the next generation of leaders to improve the health of our society.

Education
7
University of Minnesota Physicians

University of minnesota physicians serves as the integrated group practice for the university of minnesota medical school full-time faculty to provide the highest quality healthcare to patients and their families.university of minnesota…

Health
8
Memorial Sloan-Kettering Cancer Center

Leadership in the prevention, treatment, and cure of cancer through excellence, vision and cost effectiveness in patient care, outreach programs, research, and education.

Health
9
New York Genome Center Inc

Operate a state-of-the-art, world-class genomic research center that creates and uses advanced genomics to understand the genetic basis of disease. for more information, see schedule o.

Health
10
Thomas Jefferson University

Thomas jefferson university ("tju") is a comprehensive university with preeminence in transdisciplinary, experiential professional education, research and discovery, delivering exceptional value for the 21st century students with…

Education
11
Children's Research Institute

Children's research institute dba children's national research institute conducts and promotes translational and clinical medical research and education programs that lead to improved understanding, prevention, treatment, and care of…

Health
12
Dana-Farber Cancer Institute Inc

The mission of dfci is to provide expert, compassionate, and equitable care to children, adults, and their families, while advancing the understanding, diagnosis, treatment, cure, and prevention of cancer and related diseases. we train new…

Health
How this is measured
The grantee most central to the portfolio’s shape is H Lee Moffitt Cancer Center and Research Institute Inc; the most unlike its peers is Johns Hopkins Global Iii Inc. Resemblance is measured on each organization’s own IRS 990 mission text; it reflects how work is described, not its quality or impact.
05the grantee network

33 grantees tracked through their own filings, 2017–2026.

Each grant beside the grantee’s revenue from every source, year by year.

How this is measured

Counted here: distinct organizations funded across 2017 to 2026, not grant rows in a single year, so this will not match the grant count on the cover. 33 of the 49 grantees resolved in that span have returns of their own we could reconcile.

Each grantee is resolved to its own IRS returns. Association, dated; never a causal claim.

0
Load-bearing (≥25% of a budget)
6
Early backer (in before they grew)
33/33
Grantees still filing
30/33
Grew since first funded

Where the money sits, by cause and then by grantee

USC School of Medicine Greenville: $85,487 · OtherUSC School of Medicine GreenvilleREGENTS OF THE UNIVERSITY OF COLORADO: $64,025 · OtherREGENTS OF THE UNIVERSITY OF COLORADOREGENTS UNIV OF CALIFORNIA: $60,487 · OtherREGENTS UNIV OF CALIFORNIAJOHNS HOPKINS GLOBAL III INC: $55,000 · OtherJOHNS HOPKINS GLOBAL III INCMASS GENERAL BRIGHAM INCORPORATED: $50,000 · OtherMASS GENERAL BRIGHAM INCORPORATEDREGENTS OF THE UNIVERSITY OF CALIFORNIA: $50,000 · OtherREGENTS OF THE UNIVERSITY OF CALIFORNIAUNIVERSITY OF NORTH CAROLINA AT CHAPEL HILL: $50,000 · OtherUNIVERSITY OF NORTH CAROLINA AT CHAPEL H…THE UNIVERSITY OF SHEFFIELD: $49,998 · OtherTHE UNIVERSITY OF SHEFFIELDUNIVERSITY OF CALIFORNIA SAN FRANCISCO: $40,000 · OtherUNIVERSITY OF CALIFORNIA SAN FRANCISCOREGENTS OF THE UNIVERSITY OF CALIFORNIA AT SAN DIEGO: $25,000 · OtherUNIVERSITY OF MARYLAND COLLEGE PARK: $24,056 · OtherOSLO UNIVERSITY HOSPITAL: $23,800 · Other+5 more: $67,602 · Other+5 moreBaylor College of Medicine: $104,000 · EducationBaylor College of MedicineTRUSTEES OF THE UNIVERSITY OF PENNSYLVANIA: $89,432 · EducationTRUSTEES OF THE UNIVERSITY OF PENNSYLV…University of Chicago: $76,000 · EducationUniversity of ChicagoWAKE FOREST UNIVERSITY HEALTH SCIENCES: $75,000 · EducationWAKE FOREST UNIVERSITY HEALTH SCIENCESDUKE UNIVERSITY: $67,500 · EducationDUKE UNIVERSITYJOHNS HOPKINS UNIVERSITY: $55,000 · EducationJOHNS HOPKINS UNIVERSITYUNIVERSITY OF PITTSBURGH: $45,000 · EducationUNIVERSITY OF PITTSBURGHCreighton University: $37,500 · EducationCreighton UniversityDREXEL UNIVERSITY: $25,000 · EducationNew York University: $24,963 · Education+1 more: $15,000 · EducationTHE CHILDREN'S HOSPITAL OF PHILADELPHIA: $78,099 · HealthTHE CHILDREN'S HOSPITAL OF PHILA…Ann & Robert H Lurie Children's Hospital of Chicago: $77,975 · HealthAnn & Robert H Lurie Children's …CHILDREN'S HOSPITAL MEDICAL CENTER: $75,000 · HealthCHILDREN'S HOSPITAL MEDICAL CENT…HENRY M JACKSON FOUNDATION FOR THE ADVANCEMENT OF MILITARY MEDICINE: $50,000 · HealthHENRY M JACKSON FOUNDATION FOR T…MAYO CLINIC: $50,000 · HealthMAYO CLINICChildren's Hospital Corporation: $24,800 · Health+14 more: $170,977 · Health+14 moreNorthwestern University: $40,581 · Recreation & Sports
Other$645,455Education$614,395Health$526,851Recreation & Sports$40,581

Each grantee by its size and the funder’s share of it; top left is load-bearing

25%50%75%100%$1.0M$10M$100Mgrantee revenue →↑ funder's share of their budgetBaylor College of Medicine: $104,000 over 4y, 0.0% of budgetTRUSTEES OF THE UNIVERSITY OF PENNSYLVANIA: $89,432 over 2y, 0.0% of budgetTHE CHILDREN'S HOSPITAL OF PHILADELPHIA: $78,099 over 4y, 0.0% of budgetAnn & Robert H Lurie Children's Hospital of Chicago: $77,975 over 2y, 0.0% of budgetUniversity of Chicago: $76,000 over 2y, 0.0% of budgetWAKE FOREST UNIVERSITY HEALTH SCIENCES: $75,000 over 2y, 0.0% of budgetCHILDREN'S HOSPITAL MEDICAL CENTER: $75,000 over 3y, 0.0% of budgetDUKE UNIVERSITY: $67,500 over 3y, 0.0% of budgetJOHNS HOPKINS UNIVERSITY: $55,000 over 2y, 0.0% of budgetHENRY M JACKSON FOUNDATION FOR THE ADVANCEMENT OF MILITARY MEDICINE: $50,000 over 2y, 0.0% of budgetMAYO CLINIC: $50,000 over 1y, 0.0% of budgetUNIVERSITY OF PITTSBURGH: $45,000 over 2y, 0.0% of budgetNorthwestern University: $40,581 over 2y, 0.0% of budgetCreighton University: $37,500 over 1y, 0.0% of budgetDREXEL UNIVERSITY: $25,000 over 1y, 0.0% of budgetNew York University: $24,963 over 1y, 0.0% of budgetChildren's Hospital Corporation: $24,800 over 1y, 0.0% of budgetTHE BOARD OF TRUSTEES OF THE LELAND STANFORD JUNIOR UNIVERSITY: $15,000 over 1y, 0.0% of budgetThe Institute For Cancer Research: $15,000 over 1y, 0.0% of budgetCURE CMD: $14,973 over 1y, 1.9% of budgetLIFE RAFT GROUP INC: $14,500 over 1y, 0.7% of budgetUNITED MSD FOUNDATION INC: $13,650 over 1y, 3.9% of budgetFRIEDREICH'S ATAXIA RESEARCH ALLIANCE: $13,000 over 1y, 0.1% of budgetH LEE MOFFITT CANCER CENTER AND RESEARCH INSTITUTE HOSPITAL INC: $12,500 over 1y, 0.0% of budgetH LEE MOFFITT CANCER CENTER AND RESEARCH INSTITUTE INC: $12,500 over 1y, 0.0% of budgetGLOBAL FOUNDATION FOR PEROXISOMAL DISORDERS: $10,900 over 1y, 2.3% of budgetMONELL CHEMICAL SENSES CENTER: $10,346 over 1y, 0.1% of budgetTatton Brown Rahman Syndrome Community Inc: $9,000 over 1y, 9.2% of budgetNATIONAL PKU ALLIANCE INC: $8,718 over 1y, 0.5% of budgetHISTIOCYTOSIS ASSOCIATION INC: $6,773 over 1y, 0.8% of budgetGBSCIDP FOUNDATION INTERNATIONAL INC: $6,000 over 1y, 0.2% of budget
Grantee by grantee: a decade per organization, before and after funding

A decade per grantee: revenue shaded, grants as bars, all rows on one timeline.

Co-funders

Grantmakers whose grantees overlap with this funder’s far more than size alone predicts. Closer means stronger alignment; arcs show where they also fund each other. Here they form a tightly interlocked group: most of these funders back each other's grantees too.

The Children's Hospit…Vanderbilt University…Yale UniversityThe Trustees of Colum…Silicon Valley Commun…Johns Hopkins Univers…AbbVie FoundationAmerican Express Foun…Paypal Charitable Giv…Ge Aerospace Foundati…The Pfizer Foundation…National Philanthropi…
The Children's Hospital of PhiladelphiaPA13.5× affinity4 shared granteesties to 11 of 11Hover any node to trace its alignments.Compare side by side →

Open a dossier: The Children's Hospital of Philadelphia · Vanderbilt University Medical Center · Yale University · The Trustees of Columbia University in the City of New York · Silicon Valley Community Foundation · Johns Hopkins University · AbbVie Foundation · American Express Foundation · Paypal Charitable Giving Fund · Ge Aerospace Foundation · The Pfizer Foundation Inc · National Philanthropic Trust

How this is measured
Affinity is a Gamma-Poisson posterior co-funding rate, re-centered on the typical rate, so thin evidence shrinks toward no signal. Overlap is association, not proof of shared intent.

How much its grantees rely on government

Each dot is one organization National Organization for Rare Disorders Inc funds: left to right is the share of its income from government, bottom to top the share from National Organization for Rare Disorders Inc. Bigger dots raise more.

2024
’20’21’22’23’24’25
no gov · 40%1%3%6%10%funder's share of their income ↑0%25%50%75%100%share of the org’s income from government →median 12%
  • Henry M Jackson Foundation for the Advancement of Military Medicine: 100% of income from government
  • Johns Hopkins University: 12% of income from government
  • Children's Hospital Corporation: 10% of income from government
  • H Lee Moffitt Cancer Center and Research Institute Hospital Inc: 3% of income from government
no gov moneyreceives it· size = income
4get no government money at all
1report government grants on their 990 we could not trace to a source (not plotted)
1rely on government for over half their income
typical government reliance, FY20–25
How this is measured
Government income is each org’s traced federal awards (USASpending grants and contracts) plus state payments (open checkbooks) as a share of its total revenue (IRS Form 990); the self-reported government-grant line (990 line 1e) is carried for cross-check: a grantee that reports government grants we could not trace to a source is left off the chart rather than shown as receiving none. An association, not a claim that a grant caused the public funding. Coverage is precision-first, a floor rather than a census; state records exist for 9 states, so a grantee outside them shows no state figure (dimmed) rather than a false zero. Federal award amounts are obligations, which can span years, so a single-year share is indicative. 990 filings lag 12 to 24 months.

On method. Every financial figure here is read from IRS e-file XML, the funder’s own 990/990-PF, and from the multi-year returns of the 49 grantees we resolved, each linked to its source. Grantee outcomes are each organization’s own program-service reporting (Form 990, Part III), read as association with funding, never as caused by it. Low-confidence name matches are suppressed rather than guessed. How we build these →

How this is measured
Each figure carries one of six labels. Filed is what the funder reported on its return. Official is another government record about an organization, such as a federal award or a charity register, joined by name where no shared identifier exists. Resolved is an identity we worked out where the filing named a recipient without an EIN, kept only above a measured confidence threshold. Computed is arithmetic over those, like themes, portfolio clusters and co-funder strength. Context is a statistic about a place rather than about an organization, which is what the need overlay is: it describes the area a grantee’s address sits in, not where its work lands. Inferred is drawn by a model from text, like the partnerships read out of public news and organization websites. Each is labeled where it appears.

Generated from the IRS Form 990 e-file return for fiscal year 2025, released 2025. Filings run roughly 12 to 24 months behind; figures are dated accordingly.

Source object · view filing

Play a game based on National Organization for Rare Disorders’ filings →

More from the funding graph

The unnamed billions
grants reported with no recipient in the public record
The regranting layer
51% of grant dollars land in the regranting layer
The DAF merry-go-round
$9.7B circulates between donor-advised funds
The endowment market
who holds foundation money, and what just moved
The camps
funders cluster by geography, not ideology
By state
where grant money is based, and what stays home