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Global Genes at a glanceMostly funded, not a grantmaker: see who funds it →

· Public charity

Global Genes

GLOBAL GENES' mission is to drive change through the support of rare disease patients and families while equipping advocacy leaders with important tools, resources, mentoring, and connections to further advance awareness, education, and research.

$175k
Granted FY2024still arriving
7
Grants FY2024still arriving
7
States reached
$9k
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 2024.

Health$2.0MHuman Services$23kYouth Development$11kAnimals$8kPhilanthropy$5k
02FY2024 · 7 grants

Where the money goes

Grants by size, and the largest recipients.

How this is measured
The 7 grants below total $60,750, the rows itemized in this filing. The $175,264 headline is the total grant expense on the return; the other $114,514 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.
$9,000
Median grant
7
States reached
$1.5M
Total assets
Largest grants
RecipientAmount
THE SUMAIRA FOUNDATION$9,000
OXALOSIS & HYPEROXALURIA FOUNDATION$9,000
THE ALLO HOPE FOUNDATION$9,000
NATIONAL FOUNDATION FOR ECTODERMAL DYSPLASIAS$9,000
PEDIATRIC BRAIN TUMOR FOUNDATION$9,000
LHON COLLECTIVE$9,000
CURE JM FOUNDATION$6,750
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:

Its human-services grants (FY19–20, $40k) land where the poverty rate runs at 10%, against an area that typically sits at 10%. 38% of those dollars go to grantees based in above-average-need neighborhoods. Its grants skew toward lower-need ZIPs.

area typical 10%Angel Aid Cares: $10k → 7%The Myositis Assoc: $15k → 9%FACTOR-H: $15k → 14%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

AK
ME
WA
ID
MN
IL
WI
MI
NY
MA
OR
NV
OH
PA
NJ
CT
CA
CO
MO
KY
VA
MD
DE
AZ
NM
KS
TN
NC
SC
OK
LA
AL
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.
03Its grantees
repeat funding

Who it funds again

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

33%of every dollar goes to organizations it has funded before.
$658k · 22 repeat orgs$1.3M to everyone else

Grantees it renews have grown median revenue +46% since the first grant, against +34% for those funded once.

22 repeat relationships: 0 still active in FY2024, 22 since wound down; 7 grantees were first funded in FY2024 (too recent to call).

How the two cohorts compare

Re-uppedFunded once

Organizations

22
95

Total granted

$658k
$1.3M

Median revenue growth · since first grant

+46%
+34%

Still filing today

95%
87%

New vs renewed · share of each year

In FY2024, 0% of grant dollars renewed an existing relationship; $61k went to new ones.

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

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

’17’18’19’20’21’22’23’24
HealthPhilanthropyHuman ServicesEducationYouth DevelopmentCommunity ImprovementOther
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

  • FH
    flok Health FKA NATIONAL PKU NEWS
    3× · 2019–2021 · $48k · revenue +448%
  • TT
    Team Telomere Inc
    4× · 2019–2023 · $47k · revenue +300%
  • AS
    ANGELMAN SYNDROME FOUNDATION INC
    3× · 2020–2023 · $43k · revenue +110%

Funded once

  • R
    RARE-X
    one grant, 2019 · $118k
  • GP
    GLOBAL PEDIATRIC MDS INITIATIVE INC
    one grant, 2021 · $58k · 97% of their budget
  • OF
    Organization for Rare Disease
    one grant, 2019 · $38k
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
Cure ADSSL1

To find cure for adssl1 and offer hope and provide a brighter future to children affected with adenylosuccinate lyase (adsl) deficiency

Health
2
Cure Rare Foundation

Cure Rare Foundation, established in Spring 2022, is a nonprofit organization devoted to funding the research and development of treatments and cures for rare genetic diseases. In the United States, diseases are considered rare when a…

Health
3
Cystic Fibrosis Foundation

To cure cf and provide all people with cf the opportunity to lead long, fulfilling lives by funding research and drug development, partnering with the cf community, and advancing high-quality, specialized care.

Health
4
KCNMA1 Channelopathy International Advocacy Foundation

Kfiaf is a patient advocacy group providing education about the rare disease kcnma1 linked channelopathy to families and healthcare workers, as well as helping to promote and facilitate research in this area. we communicate through…

Health
5
CACNA1A Foundation

To find specific treatment options and a cure for CACNA1A patients. (See Schedule O for full mission)

Health
6
1J Foundation

Cmt 1j is a newly identified subtype of cmt, caused by an itpr3 gene mutation. this neuromuscular disease causes widely variable symptoms ranging from mild walking difficulties to significant mobility and respiratory impairments. the 1j…

Health
7
Mld Foundation

MLD Foundation works with families, researchers, regulators, industry, and policy-makers to improve the quality of life for those with MLD including standards of clinical care and clinical research excellence, develop and implement newborn…

Health
8
Mila's Miracle Foundation

The mission of mila's miracle foundation is to find and fund paths to a cure for batten and other life-threatening neurological disorders. families in this community have been pivotal in raising the necessary funds and awareness. together,…

Health
9
Dysimmune Diseases Foundation
Health
10
ADCY5 Org Inc

ADCY5.org supports the following groups: families affected by the ADCY5 gene variant rare disease, clinicians treating patients, and researchers pursuing treatments. We achieve our goals through collaboration, or funding efforts. We look…

Health
11
Rare Genomics Institute Inc

Support undiagnosed and rare disease patients and famil

Health
12
Cadasil Association

The mission of curecadasil is to raise awareness of cadasil, ensuring it will be universally recognized and understood by the medical community, enabling patients to be correctly diagnosed. we are dedicated to helping all touched by…

Health
How this is measured
The grantee most central to the portfolio’s shape is Angelman Syndrome Foundation Inc; the most unlike its peers is Asociacion Puertorriquena De Hemofilia Inc. Resemblance is measured on each organization’s own IRS 990 mission text; it reflects how work is described, not its quality or impact.
04the grantee network

114 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. 114 of the 125 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.

5
Load-bearing (≥25% of a budget)
41
Early backer (in before they grew)
112/114
Grantees still filing
77/114
Grew since first funded

Where the money sits, by cause and then by grantee

GLOBAL PEDIATRIC MDS INITIATIVE INC: $58,000 · HealthTeam Telomere Inc: $47,100 · HealthANGELMAN SYNDROME FOUNDATION INC: $42,500 · Health+80 more: $1,082,059 · Health+80 moreRARE-X: $118,018 · OtherRARE-Xflok Health FKA NATIONAL PKU NEWS: $48,000 · Otherflok Health FKA NATIONAL PK…Koolen-de Vries Syndrome FND: $42,554 · OtherKoolen-de Vries Syndrome FN…Organization for Rare Disease: $37,500 · OtherOrganization for Rare Disea…THE MARFAN FOUNDATION INC: $20,000 · OtherSickle Cell Disease Association of America Inc: $20,000 · OtherHEMOPHILIA FOUNDATION OF SOUTHERN CALIFORNIA: $20,000 · OtherMIRACLE FOR JADE FIGHT FOR LIFE FOUNDATION: $20,000 · Other+17 more: $159,048 · Other+17 moreHELPING HANDS FOR GAND INC: $37,985 · PhilanthropyFOUNDATION FOR SARCOIDOSIS RESEARCH: $34,500 · PhilanthropyBREATHESTRONG CF INC: $20,000 · PhilanthropyThe LAM Foundation: $15,000 · PhilanthropyBEAUTIFUL YOU MRKH FOUNDATION: $15,000 · PhilanthropyCureGrin Foundation: $15,000 · PhilanthropyNEW ENGLAND HEMOPHILIA ASSOCIATION INC: $14,179 · Philanthropy+1 more: $5,000 · PhilanthropyThe Myositis Association: $15,000 · Human ServicesFACTOR H: $15,000 · Human ServicesRAREGIVERS INC: $10,000 · Human ServicesCARDIO-FACIO-CUTANEOUS INTERNATIONAL: $30,000 · EducationMISSION CURE INC: $5,000 · EducationAKARI FOUNDATION: $23,000 · InternationalGlobal Impact: $10,000 · InternationalOUR ODYSSEY INC: $25,000 · Youth DevelopmentSTONE SOUP GROUP: $10,000 · Community Improvement
Health$1,229,659Other$485,120Philanthropy$156,664Human Services$40,000Education$35,000International$33,000Youth Development$25,000Community Improvement$10,000

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

25%50%75%100%$100k$1.0M$10M$100Mgrantee revenue →↑ funder's share of their budgetGLOBAL PEDIATRIC MDS INITIATIVE INC: $58,000 over 1y, 97% of budgetflok Health FKA NATIONAL PKU NEWS: $48,000 over 3y, 9.1% of budgetTeam Telomere Inc: $47,100 over 4y, 3.1% of budgetANGELMAN SYNDROME FOUNDATION INC: $42,500 over 3y, 1.1% of budgetBRAIN RECOVERY PROJECT: $39,200 over 3y, 8.3% of budgetHELPING HANDS FOR GAND INC: $37,985 over 2y, 19% of budgetGLOBAL FOUNDATION FOR PEROXISOMAL DISORDERS: $35,500 over 3y, 3.5% of budgetFOUNDATION FOR SARCOIDOSIS RESEARCH: $34,500 over 3y, 0.6% of budgetANGIOMA ALLIANCE DBA ALLIANCE TO CURE CAVERNOUS MALFORMATIONS: $34,400 over 3y, 2.4% of budgetCARDIO-FACIO-CUTANEOUS INTERNATIONAL: $30,000 over 3y, 7.1% of budgetPHELAN MCDERMID SYNDROME FOUNDATION: $29,000 over 2y, 1.6% of budgetCONGENITAL HYPERINSULINISM INTERNATIONAL: $26,137 over 2y, 3.2% of budgetCOALITION FOR USHER SYNDROME RESEARCH: $25,000 over 2y, 6.0% of budgetOUR ODYSSEY INC: $25,000 over 2y, 26% of budgetProgressive Familial Intrahepatic Cholestasis: $25,000 over 2y, 7.7% of budgetCYSTIC FIBROSIS RESEARCH INSTITUTE: $25,000 over 2y, 0.9% of budgetAKARI FOUNDATION: $23,000 over 1y, 21% of budgetSATB2 Gene Foundation Inc: $22,500 over 2y, 11% of budgetTHE MARFAN FOUNDATION INC: $20,000 over 2y, 0.2% of budgetSickle Cell Disease Association of America Inc: $20,000 over 1y, 0.3% of budgetTHE FAMILIESCN2A FOUNDATION INC: $20,000 over 1y, 3.3% of budgetIllinois Spina Bifida Association: $20,000 over 1y, 8.6% of budgetRIDE FOR LIFE INC: $20,000 over 1y, 5.4% of budgetHEMOPHILIA FOUNDATION OF SOUTHERN CALIFORNIA: $20,000 over 1y, 1.9% of budgetSouth Central Pennsylvania Sickle Cell Council: $20,000 over 1y, 6.7% of budgetMITOACTION INC: $20,000 over 1y, 2.3% of budgetBREATHESTRONG CF INC: $20,000 over 1y, 8.1% of budgetALAGILLE SYNDROME ALLIANCE: $16,998 over 1y, 10% of budgetKIF1AORG INC: $16,240 over 1y, 10% of budgetTHE FIBROUS DYSPLASIA FOUNDATION: $15,200 over 2y, 4.1% of budgetLYMPHANGIOMATOSIS & GORHAMS DISEASE ALLIANCE INC: $15,000 over 1y, 12% of budgetThe LAM Foundation: $15,000 over 1y, 0.8% of budgetVHL ALLIANCE INC: $15,000 over 1y, 1.9% of budgetCOMBINEDBRAIN INC: $15,000 over 1y, 2.0% of budgetUPLIFTING ATHLETES INC: $15,000 over 1y, 1.7% of budgetBleeding Disorders Alliance Illinois: $15,000 over 1y, 3.3% of budgetSickle Cell Texas Marc Thomas Foundation: $15,000 over 1y, 2.1% of budgetGRIN2B FOUNDATION: $15,000 over 1y, 14% of budgetFIGHTING FOR KAIDEN FOUNDATION INC: $15,000 over 1y, 10% of budgetXLH NETWORK INC: $15,000 over 1y, 6.8% of budgetThe Myositis Association: $15,000 over 1y, 1.5% of budgetWILLIAM E PROUDFORD SICKLE CELL FUND INC: $15,000 over 1y, 12% of budgetFACTOR H: $15,000 over 1y, 4.2% of budgetADRENAL INSUFFICIENCY UNITED: $15,000 over 1y, 19% of budgetALPORT SYNDROME FOUNDATION INC: $15,000 over 1y, 2.3% of budgetBEAUTIFUL YOU MRKH FOUNDATION: $15,000 over 1y, 35% of budgetCloves Syndrome Community: $15,000 over 1y, 4.4% of budgetTHE TENNESSEE PKU FOUNDATION: $15,000 over 1y, 28% 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.

Silicon Valley Commun…The Simons Foundation…AbbVie FoundationChild Neurology Educa…American Express Foun…The Pfizer Foundation…The Lazard Charitable…Global ImpactShell USA Company Fou…McKesson Foundation I…Paypal Charitable Giv…Hemophilia Federation…
Silicon Valley Community FoundationCA21.7× affinity29 shared granteesties to 11 of 11Hover any node to trace its alignments.Compare side by side →

Open a dossier: Silicon Valley Community Foundation · The Simons Foundation Inc · AbbVie Foundation · Child Neurology Education and Research Foundation · American Express Foundation · The Pfizer Foundation Inc · The Lazard Charitable Foundation · Global Impact · Shell USA Company Foundation · McKesson Foundation Inc · Paypal Charitable Giving Fund · Hemophilia Federation of America

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 Global Genes funds: left to right is the share of its income from government, bottom to top the share from Global Genes. Bigger dots raise more.

2024
’20’21’22’23’24’25
no gov · 240%6%25%56%100%funder's share of their income ↑0%23%45%68%90%share of the org’s income from government →median 1%
  • Ch Neurology Foundation Inc: 1% of income from government
  • Raymond a Wood Foundation Inc: 0% of income from government
no gov moneyreceives it· size = income
24get no government money at all
8report government grants on their 990 we could not trace to a source (not plotted)
0rely on government for over half their income
⤢ axis zoomed · 0–90%
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 125 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 2024, released 2024. Filings run roughly 12 to 24 months behind; figures are dated accordingly.

Source object · view filing

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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