Form 990 for tax year 2022

Totals

Total revenue

$13,595,220

Total expenses

$14,534,841

Contributions and grants received

$13,465,526

Grants paid

$5,395,276

Program service revenue

$0

Investment income

$101,383

Other revenue

$28,311

Total assets, end of year

$8,367,265

Total liabilities, end of year

$3,104,627

Net assets or fund balances, end of year

$5,262,638

Program services expenses (Part IX)

$11,879,374

Management and general expenses

$2,655,467

Fundraising expenses

$0

Program service expenses (Part III)

$11,879,374

Program services were 81.7% of total expenses calculated — Part IX's program-services column over total expenses, both as filed.

Line items

Every line the filer filed in Parts VIII, IX and X, as filed and in filed order. Blank columns are left out, and the lines are not forced to add up to the totals above.

Mission and programs · 2022

• CDC SURVEILLANCE - THIS CENTER FOR DISEASE CONTROL COOPERATIVE AGREEMENT FUNDS THE COMMUNITY COUNTS CDC PUBLIC HEALTH SURVEILLANCE PROJECT TO CREATE A UNIFORM SET OF DEMOGRAPHIC AND HEALTH SERVICES UTILIZATION DATA CHARACTERIZING THE POPULATION WITH BLEEDING AND CLOTTING DISORDERS AND TO MONITOR HEALTH INDICATORS OF THESE POPULATIONS. COMMUNITY COUNTS CONSISTS OF THREE PARTS, HTC POPULATION PROFILE, MORTALITY REPORTING, AND THE REGISTRY FOR BLEEDING DISORDERS SURVEILLANCE. MORE THAN 122,809 PATIENTS ARE INVOLVED IN THE CDC SURVEILLANCE PROJECT.

  Expenses $4,253,536 · Grants $3,690,055

• ATHN SYSTEMS - THIS PROGRAM COMPRISES THE SOFTWARE SYSTEMS AND CAPABILITIES REQUIRED AS A STEWARD OF A SECURE NATIONAL DATABASE USED TO SUPPORT CLINICAL OUTCOMES ANALYSIS, RESEARCH, AND PUBLIC HEALTH WITH REPORTING BY OVER 140 TREATMENT CENTERS, GOVERNMENT ENTITIES, AND RESEARCHERS.

  Expenses $3,306,761 · Grants $642,150

• HRSA MCHB - THIS NATIONAL HEMOPHILIA PROGRAM IS A COOPERATIVE AGREEMENT WHICH FUNDS THE FIRST NATIONAL HEMOPHILIA PROGRAM COORDINATING CENTER. THE PROJECT CREATES A NATIONAL NETWORK TO OPTIMIZE THE CARE FOR PATIENTS WITH BLEEDING AND THROMBOTIC DISORDERS OVER THEIR LIFETIME AND ACROSS GENERATIONS AND EXTENDS ATHN'S LEADERSHIP FROM THE HTCS AND REGIONS TO A BROADER GROUP OF STAKEHOLDERS SUCH AS PROFESSIONAL ORGANIZATIONS, PATIENT ADVOCACY GROUPS, PAYERS, AND GOVERNMENT PARTNERS.

  Expenses $514,419

• DATA QUALITY COUNTS

  Expenses $664,230

• CDC COVID VTE PROGRAM

  Expenses $260,419 · Grants $895

• ATHN RESEARCH PRGORAMS

  Expenses $2,880,009 · Grants $1,062,176

As filed on the 2022 return. The filer continues this part on Schedule O, which is not shown here.

Listed in Part VII

Compensation is as filed in Part VII: reportable pay from this organization and from related organizations, other compensation, and hours per week. The total, marked calculated, is our sum of the three dollar columns, with a blank column counted as $0; the form itself has no total. On a Form 990-EZ the columns are Part IV's instead, and on a Form 990-PF Part VIII's — compensation, contributions to benefit plans, and expense account — and the total sums those. A Schedule J breakdown is as filed: base pay, bonus, other, deferred compensation and nontaxable benefits from this organization, with any from related organizations beside each, and the filer's own total. It is shown with the Part VII listing of the same name on the same return. The form gives no key between the two, so that pairing is ours, and is marked matched by us.

Schedule J

Part I's answers as filed. A line not listed was left unanswered; on lines 1a and 3 that means the box was not checked.

Grants on this return

• HEMOPHILIA FOUNDATION OF MICHIGAN

  $604,458

  DATA MANAGEMENT CAPACITY RESEARCH

• UNIVERSITY OF TEXAS HOUSTON (671)

  $434,032

  DATA MANAGEMENT CAPACITY RESEARCH

• CHILDREN'S HOSPITAL OF PHILADELPHIA

  $423,186

  DATA MANAGEMENT CAPACITY RESEARCH

• GREAT LAKES HEMOPHILIA FOUNDATION

  $417,962

  DATA MANAGEMENT CAPACITY RESEARCH

• CENTER FOR INHERITED BLOOD DISORDERS

  $368,334

  DATA MANAGEMENT CAPACITY RESEARCH

• ICAHN SCHOOL OF MEDICINE AT MT SINAI

  $349,447

  DATA MANAGEMENT CAPACITY RESEARCH

• OREGON HEALTH & SCIENCE UNIVERSITY

  $334,453

  DATA MANAGEMENT CAPACITY RESEARCH

• HEMOPHILIA OF GEORGIA - CDC

  $297,317

  DATA MANAGEMENT CAPACITY RESEARCH

• UNIVERSITY OF NORTH CAROLINA CHAPEL HILL

  $285,177

  DATA MANAGEMENT CAPACITY RESEARCH

• BOSTON CHILDREN'S HOSPITAL - RESEARCH FINANCE

  $267,078

  DATA MANAGEMENT CAPACITY RESEARCH

The 10 largest by cash amount. The API serves every itemized grant.

Provenance

Return type

form_990

Tax year

2022

Filed

10 November 2023

IRS schema version

2022v5.0

Source object

202343189349303474

Check it against the return as filed: the GivingTuesday Data Lake hosts a public copy of the original XML.

The source document this was parsed from is served over the API, which is where bulk and document access live.