US Hereditary Angioedema Association
Legal name: Hereditary Angioedema Association Inc
Nonprofit profile at a glance
- EIN
- 251852548
- IRS 990 coverage
- 2010–2024
- Official website data refreshed
- Sep 2026
- Forms available
- Form 990 2024
- Location
- Fairfax City, VA, United States
- Phone
- (866) 798-5598
- Rating
- 76
- Verdict
- SUPPORTED
- Rating confidence
- Standard
- Sector
- Health - General and Rehabilitative N.E.C.
Reported finances
- Revenue
- $9,963,196
- Expenses
- $5,527,827
- Assets
- $21,869,496
- Liabilities
- $654,083
Source: IRS Form 990. Selected filing: tax year 2024. Amounts in USD.
Leadership & pay
9 people listed
Executive titles in this filing
- HENRIK BALLE BOYSEN (PRESIDENT)
Highest reported compensation
- MICHELLE CUEVAS (FORMER SENIOR EXECUTIVE VPCOO): $336,688 total reported compensation
- ANTHONY CASTALDO (CHAIRCHIEF EXECUTIVE OFFICER): $245,295 total reported compensation
- LEIGH FARRAR (EXECUTIVE VPCHIEF FINANCIAL OFFICE): $225,004 total reported compensation
Source: IRS Form 990. Selected filing: tax year 2024. Names and roles reflect this filing, not necessarily current officeholders.
Overview
Mission
To lead a nationwide advocacy movement that focuses on increasing HAE awareness and education, empowering access to suitable treatment, and fostering ground-breaking research that includes searching for a cure.
What it reported doing in 2024
The hae associations overall objective is to save lives and raise the quality of life for patients with the rare, debilitating, and potentially fatal rare disease hereditary angeodema. We provide patients and physicians with essential, authoritative information aimed at increasing diagnosis rates and helping patients find an appropriate treatment. We offer an array of programs, services, and activities that include continuing medical education, in person and web based seminars, patient and scientific conferences, support groups, and individual counseling. The haea website and extensive social media presense enhances our ability to reach and disseminate information to the patient and physician communities. We are staunch advocates for (1) patient access to and sufficient insurance reimbursement for currently available therapies, and (2) research directed towards helping patients improve their quality of life and, ultimately, finding a cure. The haea also conducts national patient and physician meetings, and offers a variety of services to individuals and families that include physician and clinical trial referrals and assistance in dealing with disease-related emergencies.
Operating model
- Revenue model
- Donor-supported. 93% of the money available for current operations came from contributions and gifts.
- Distribution model
- Direct operator. The filing allocates 87% 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 total spending goes to programs and the filed numbers largely add up. A relatively small share of available resources goes toward mission work and the filing does not identify recipients for some grant dollars.
Rating breakdown
- Financial Efficiency: 71
- Transparency & Controls: 74
- Accountability: 81
- Sustainability: 76
- Growth: 100
Detailed rating inputs
Financial Efficiency
- Mission deployment rate: 54.5%; rating input score 54
- Program expense ratio: 92.3%; rating input score 92
- Fundraising efficiency: $218.91 raised per $1 spent on fundraising; rating input score 92; 92nd percentile among comparable filings
Transparency & Controls
- Consistency checks: 92.9%; rating input score 93; 13th percentile among comparable filings
- Pay-setting controls: 4 of 6 controls in place; rating input score 67
- Compensation committee: Missing
- Independent consultant: Pass
- Other Form 990s reviewed: Pass
- Written employment contract: Missing
- Compensation survey or study: Pass
- Board or committee approval: Pass
- Foreign activity oversight: Limited
- Grant itemization coverage: 27.4%; rating input score 27; 13th percentile among comparable filings
- Major donor itemization: Yes; rating input score 100
- Related-party transparency: Limited
Accountability
- Independent voting board: 66.7%; rating input score 67; 11th percentile among comparable filings
- Governance controls: 8 of 8 controls in place; rating input score 100
- Conflict-of-interest policy: Pass
- Whistleblower policy: Pass
- Document-retention policy: Pass
- CEO compensation review process: NotApplicable
- Other executive compensation review process: Pass
- Form 990 shared with the board: Pass
- Board meeting minutes documented: Pass
- Audit committee oversight: Pass
- Independent financial-statement audit: Pass
Sustainability
- Operating margin: 44.5%; rating input score 90; 90th percentile among comparable filings
- Total-asset coverage ratio: 3.96; rating input score 80; 80th percentile among comparable filings
- Liabilities to assets ratio: 0.03; rating input score 76; 76th percentile among comparable filings
- Officer compensation ratio: 18%; rating input score 14; 14th percentile among comparable filings
Growth
- Program expense growth: 5.4% per year; rating input score 100; 42nd percentile among comparable filings
- Revenue growth: 9.6% per year; rating input score 100; 67th percentile among comparable filings
- Asset growth: 12.3% per year; rating input score 100; 67th percentile among comparable filings
Details
- What they do: 10 programs and campaigns described on the official site · 1 operating location identified
- Where the money goes: 54.5% of revenue deployed · 92.3% of spending went to programs
- Governance: 4 of 6 board members independent · 8 of 8 filing controls reported
- Programs: 1 filed program accomplishment · $5.1M in reported program spending
- Leadership: top reported pay $337K · 9 people listed · 4 of 6 pay-setting controls reported
- Consistency: 30 of 31 current checks pass · 1 finding to review
- Schedules: 6 filed schedules · includes major donors, grants, and executive pay
- Filing history: 14 filing years from 2010 to 2024
- Contacts: How to reach this organization
- Money network: 6 filed money-flow records
- Related organizations: 1 filed related-organization link
- 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.
- Review — Financial Efficiency: Mission deployment rate scored 54/100.
- High — Transparency & Controls: Grant itemization coverage scored 27/100.
- High — Sustainability: Officer compensation ratio scored 14/100.
- Review — Transparency & Controls: Domestic grant itemization did not reconcile in the filed values.