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· 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 you fundRead
02The needRead
03Your edgeRead
04Your fieldRead
01What you fund
0165% classified

What you funded, over time

Every grant clustered by its grantee’s IRS cause code (NTEE), by year — across FY2017–2025.

Education$614kHealth$527kRecreation & Sports$41kOther$645k
02FY2025 · 4 grants

Where the money goes

Your grants by size, and where they go.

The 4 grants below total $101,582 — the rows itemised in this filing. The $22,081,890 headline is the total grant expense reported on the return, so the remaining $21,980,308 is giving the schedule does not break out: grants under the $5,000 itemisation floor, grants to individuals, and grants reported on other schedules. Every figure below describes the itemised 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

Do your dollars go where the need is?

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

show:

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

Matched: human-services grants are those whose grantee’s IRS cause code is Human Services. Placed by people below the poverty linein the grantee’s ZIP, averaged from the tracts in that ZIP; grantee ZIP can differ from where services are delivered.

Which US states your grants reach

MN
IL
WI
NY
MA
OH
PA
NJ
CA
CO
NE
MD
NC
SC
OK
MS
GA
TX
FL

US grants placed by each grantee’s ZIP, which can differ from where services are actually delivered. Need from public data — U.S. Census/ACS, CDC PLACES, Eviction Lab, USDA — shown as context about the area, never attributed to your giving.

04

Where the work is directed

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

About 5% of National Organization for Rare Disorders Inc’s grant dollars are earmarked, by their stated purpose, for a different county than the recipient’s own address — money that lands at a nonprofit in one place but is meant to do its work in another.

National Organization for Rare Disorders Inclessmore of its giving
Placed by recipient address · 7.4% directed abroad (not shown)

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 foundation’s own 990 grant descriptions.

03Your edge
repeat funding

Who you back again

Which organizations you funded more than once, and which you funded a single time. Each grantee is matched to its own filings.

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

And the relationships you keep tend to grow: grantees you re-up on have seen median revenue of +44% since the first grant, against +41% for the ones you funded once.

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%
+41%

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

First-time = a grantee’s first year in your filing window; renewed = funded in an earlier year too. As a portfolio matures the renewed share naturally climbs — once funded, an org stays “renewable” — so the signal is the years that buck it (a new-grantee intake wave). 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
  • UO
    UNIVERSITY OF NORTH CAROLINA AT CHAPEL HILL
    one grant, 2017 · $50k
  • RO
    REGENTS OF THE UNIVERSITY OF CALIFORNIA
    one grant, 2017 · $50k

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

04Your field

The map has a center of gravity: the average direction from the rest of the sector toward the organizations the foundation funds — the shape of its giving. Scoring every nonprofit along that direction surfaces the ones that look most like the portfolio. These are the closest matchesthat aren’t grantees — a resemblance in what they say they do, not a recommendation.

1
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
2
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
3
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
4
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
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
The Translational Genomics Research Institute

Please see schedule o

Health
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
Albany College of Pharmacy and Health Sciences

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

Education
9
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
10
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
11
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
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

For reference, the grantee most central to the portfolio’s shape is H Lee Moffitt Cancer Center and Research Institute Inc and the most unlike its peers is CHAMP1 Research Foundation Corporation. Resemblance is measured on each organization’s own IRS 990 mission text; it reflects how work is described, not its quality or impact.

Your grantees are a median of 51 years old; the field is 16. You back the established end — and your money leans older still.

THE FIELDby orgYOUR GRANTEESby number22%0%<5yr14%8%5–10yr19%13%10–20yr16%10%20–35yr13%23%35–55yr16%46%55yr+
THE FIELDby orgYOUR MONEYby value22%0%<5yr14%5%5–10yr19%7%10–20yr16%4%20–35yr13%15%35–55yr16%70%55yr+

The field is 22% startups (under 5 years old) — 0% of your grantees by number, and just 0% of your money.

Closures · last 5 years

The orgs you fund almost never close — 0.0% lost their exemption, against 13% of the field you don’t fund.

orgs you fund
0.0%0/49
the rest of the field
13%
240,396/1,819,516

Age = years since IRS exemption (a founding proxy). “Closed” = auto-revocation for 3 years of non-filing — a floor on closure, not proof, and bigger established orgs lapse least. Association, not causation.

05the grantee network

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

Each one resolved to its own IRS returns and tracked year by year — your grant beside their revenue from every source. Association, dated; never a causal claim.

Counted here: distinct organizations you funded across 2017–2026, 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; the rest are funded organizations whose filings we could not track year by year.

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

Where your money sits — by cause, 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 INCUNIVERSITY OF NORTH CAROLINA AT CHAPEL HILL — $50,000 · OtherUNIVERSITY OF NORTH CAROLINA AT CHAPEL H…REGENTS OF THE UNIVERSITY OF CALIFORNIA — $50,000 · OtherREGENTS OF THE UNIVERSITY OF CALIFORNIAMASS GENERAL BRIGHAM INCORPORATED — $50,000 · OtherMASS GENERAL BRIGHAM INCORPORATEDTHE 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 org by its size and your share of it — top-left is where you’re load-bearing

25%50%75%100%$1.0M$10M$100Mgrantee revenue →↑ your 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 Institute For Cancer Research — $15,000 over 1y, 0.0% of budgetTHE BOARD OF TRUSTEES OF THE LELAND STANFORD JUNIOR UNIVERSITY — $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
Go grantee by grantee — a decade per org, and how each moved after you funded them

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

The grantmakers whose grantees overlap with yours far more than size alone predicts. Each orbits closer the stronger the alignment; the arcs between them show where they also fund each other. Here it reads as a tightly interlocked camp — 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

Affinity is a Gamma-Poisson posterior co-funding rate, re-centered on the typical rate, so thin evidence shrinks toward no signal. A research starting point: overlap is association, not proof of shared intent.

Government reliance of your grantees

Every dot is one organization National Organization for Rare Disorders Inc funds. Left–right is the share of its income from government; up–down is the share from you. Bigger dots raise more. Filter to federal, a single department, or state — and drag the year to watch it move.

2024
’20’21’22’23’24’25
no gov · 40%1%3%6%10%your 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

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 your grant caused the public funding. Coverage is precision-first — a floor, not 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 12–24 months.

On method. Every financial figure here is read directly from IRS e-file XML — your own 990/990-PF and the multi-year returns of the 49 grantees we resolved across every year we hold, several hundred filings in all (a different count from the grant rows on the cover, which are one fiscal year)— each linked to its source. Grantee achievements and outcomes are each organization’s own program-service reporting (Form 990, Part III); we read these as association with sustained funding — the foundation is one of several forces — suppress low-confidence name matches rather than guess, and say so where a figure rests on a single grant or filing. Not everything on this page is a filed figure, and the difference matters. Filed is what you reported on your 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. How we build these →

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

Source object · view filing

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 camps
funders cluster by geography, not ideology
By state
where grant money is based, and what stays home
State money flows
the interactive map of money crossing state lines