Alagille Syndrome Alliance

Nonprofit profile at a glance

EIN
931243619
IRS 990 coverage
2018–2025
Forms available
Form 990 2025
Location
Washington, DC, USA
Phone
9012868869
Rating
85
Verdict
STRONG
Rating confidence
Moderate
Sector
Eye Diseases, Blindness & Vision Impairments Research

Reported finances

Revenue
$1,165,369
Expenses
$1,104,074
Assets
$700,366
Liabilities
$4,944

Source: IRS Form 990. Selected filing: tax year 2025. Amounts in USD.

Leadership & pay

6 people listed

Executive titles in this filing

  • ROBERTA SMITH (PRESIDENT)

Highest reported compensation

  • ROBERTA SMITH (PRESIDENT): $128,322 total reported compensation

Source: IRS Form 990. Selected filing: tax year 2025. Names and roles reflect this filing, not necessarily current officeholders.

Overview

Mission

Mobilize resources, facilitate connections, promoting unity, and advocating for a cure to inspire, empower, and enrich the lives of people living with alagille syndrome.

What it reported doing in 2025

Algsa scientific research network

Operating model

Revenue model
Donor-supported. 100% of the money available for current operations came from contributions and gifts.
Distribution model
Direct operator. The filing allocates 97% 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

STRONG - A large share of available resources goes toward mission work and the filed numbers largely add up. Some filing-based governance responses are negative or unanswered and expenses are high relative to revenue.

Rating breakdown

  • Financial Efficiency: 80
  • Transparency & Controls: 94
  • Accountability: 90
  • Sustainability: 41
  • Growth: 100

Detailed rating inputs

Financial Efficiency

  • Mission deployment rate: 79.5%; rating input score 80
  • Program expense ratio: 83.9%; rating input score 84
  • Fundraising efficiency: $34.03 raised per $1 spent on fundraising; rating input score 68; 68th percentile among comparable filings

Transparency & Controls

  • Consistency checks: 100%; rating input score 100; 63rd percentile among comparable filings
  • Pay-setting controls: Limited
  • Foreign activity oversight: Limited
  • Grant itemization coverage: 100%; rating input score 100; 78th percentile among comparable filings
  • Major donor itemization: Yes; rating input score 100
  • Related-party transparency: Limited

Accountability

  • Independent voting board: 100%; rating input score 100; 64th percentile among comparable filings
  • Governance controls: 6 of 8 controls in place; rating input score 75
    • Conflict-of-interest policy: Pass
    • Whistleblower policy: Fail
    • Document-retention policy: Fail
    • CEO compensation review process: Pass
    • Other executive compensation review process: NotApplicable
    • Form 990 shared with the board: Pass
    • Board meeting minutes documented: Pass
    • Audit committee oversight: Pass
    • Independent financial-statement audit: Pass

Sustainability

  • Operating margin: 5.3%; rating input score 45; 45th percentile among comparable filings
  • Total-asset coverage ratio: 0.63; rating input score 30; 30th percentile among comparable filings
  • Liabilities to assets ratio: 0.01; rating input score 63; 63rd percentile among comparable filings
  • Officer compensation ratio: 11.6%; rating input score 33; 33rd percentile among comparable filings

Growth

  • Program expense growth: 26.7% per year; rating input score 100; 86th percentile among comparable filings
  • Revenue growth: 22% per year; rating input score 100; 85th percentile among comparable filings
  • Asset growth: 16.4% per year; rating input score 100; 72nd percentile among comparable filings

Details

  • Where the money goes: 79.5% of revenue deployed · 83.9% of spending went to programs
  • Governance: 6 of 6 board members independent · 6 of 8 filing controls reported
  • Programs: 4 filed program accomplishments · $927K in reported program spending
  • Leadership: top reported pay $128K · 6 people listed
  • Consistency: 23 of 23 current checks pass
  • Schedules: 5 filed schedules · includes major donors and grants
  • Filing history: 8 filing years from 2018 to 2025
  • Contacts: How to reach this organization
  • Money network: 1 filed money-flow record
  • Related organizations: Filed and resolved organization relationships.
  • 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 — Accountability: Governance controls: 2 of 8 not reported.
  • Moderate — Sustainability: Operating margin scored 45/100.
  • Moderate — Sustainability: Total-asset coverage ratio scored 30/100.
  • Moderate — Sustainability: Officer compensation ratio scored 33/100.