HAE International

Nonprofit profile at a glance

EIN
832498576
IRS 990 coverage
2019–2024
Forms available
Form 990 2024
Location
Fairfax, VA, USA
Phone
8667985598
Rating
71
Verdict
SUPPORTED
Rating confidence
Moderate
Sector
Specifically Named Diseases Research

Reported finances

Revenue
$6,614,500
Expenses
$4,728,926
Assets
$7,104,376
Liabilities
$50,400

Source: IRS Form 990. Selected filing: tax year 2024. Amounts in USD.

Leadership & pay

8 people listed

Executive titles in this filing

  • Anthony J Castaldo (President)
  • Michal Rutkowski (Vice President)

People named in this filing

  • Sarah Smith Foltz (Director)
  • Jorn Schultz-Boysen (Director)
  • Rachel Annals (Director)

Selected names, not a complete roster or a statement of current roles. Open leadership details for the complete filed list.

Source: IRS Form 990. Selected filing: tax year 2024. Names and roles reflect this filing, not necessarily current officeholders.

Overview

Mission

A global not-for-profit network of patient associations dedicated to improving the lives of people with hereditary angioedema (HAE) by raising awareness of HAE, improving diagnosis time and providing advocacy for approval and reimbursement for lifesaving therapies.

What it reported doing in 2024

Development of a global not-for-profit network of patient associations dedicated to improving the lives of people with hereditary angioedema (HAE) by raising awareness of HAE, improving diagnosis time and providing advocacy for approval and reimbursement for lifesaving therapies for individuals.

Operating model

Revenue model
Donor-supported. 96% of the money available for current operations came from contributions and gifts.
Distribution model
Direct operator. The filing allocates 100% of reported program-service expenses outside its grant, affiliate-payment, and member-benefit lines. This expense classification does not rule out separately announced grant awards.

The verdict

SUPPORTED - A large share of available resources goes toward mission work and most voting board members are independent. The filing reports few safeguards for money sent abroad and the filing does not identify recipients for some grant dollars.

Rating breakdown

  • Financial Efficiency: 70
  • Transparency & Controls: 58
  • Accountability: 82
  • Sustainability: 75
  • Growth: 100

Detailed rating inputs

Financial Efficiency

  • Mission deployment rate: 68.9%; rating input score 69
  • Program expense ratio: 94.6%; rating input score 95
  • Fundraising efficiency: Limited

Transparency & Controls

  • Consistency checks: 100%; rating input score 100; 63rd percentile among comparable filings
  • Pay-setting controls: Limited
  • Foreign activity oversight: Scored; rating input score 0
  • Grant itemization coverage: Scored; rating input score 0
  • Major donor itemization: Yes; rating input score 100
  • Related-party transparency: Limited

Accountability

  • Independent voting board: 100%; rating input score 100; 63rd percentile among comparable filings
  • Governance controls: 4 of 7 controls in place; rating input score 57
    • Conflict-of-interest policy: Pass
    • Whistleblower policy: Fail
    • Document-retention policy: Pass
    • CEO compensation review process: NotApplicable
    • Other executive compensation review process: NotApplicable
    • Form 990 shared with the board: Pass
    • Board meeting minutes documented: Pass
    • Audit committee oversight: Missing
    • Independent financial-statement audit: Fail

Sustainability

  • Operating margin: 28.5%; rating input score 83; 83rd percentile among comparable filings
  • Total-asset coverage ratio: 1.5; rating input score 52; 52nd percentile among comparable filings
  • Liabilities to assets ratio: 0.01; rating input score 87; 87th percentile among comparable filings
  • Officer compensation ratio: 0%; rating input score 91; 91st percentile among comparable filings

Growth

  • Program expense growth: 17.4% per year; rating input score 100; 82nd percentile among comparable filings
  • Revenue growth: 19.1% per year; rating input score 100; 87th percentile among comparable filings
  • Asset growth: 23.5% per year; rating input score 100; 88th percentile among comparable filings

Details

  • Where the money goes: 68.9% of revenue deployed · 94.6% of spending went to programs
  • Governance: 8 of 8 board members independent · 4 of 7 filing controls reported
  • Programs: 1 filed program accomplishment · $4.5M in reported program spending
  • Leadership: top reported pay $0 · 8 people listed
  • Consistency: 19 of 19 current checks pass
  • Schedules: 5 filed schedules · includes major donors and foreign activity
  • Filing history: 5 filing years from 2019 to 2024
  • Contacts: How to reach this organization
  • Grant readiness: Federal tax and exclusion status, award history, and grant-maker relationships.
  • People: Everyone the filings name, and which of them the filings identify by more than a name.

Key Signals

Signals prioritize questions for review. They are not findings of misconduct.

  • High — Transparency & Controls: Foreign activity oversight scored 0/100.
  • High — Transparency & Controls: Grant itemization coverage scored 0/100.
  • Review — Accountability: Governance controls: 2 of 6 not reported.
  • Review — Sustainability: Total-asset coverage ratio scored 52/100.