International Society of Amyloidosis

Nonprofit profile at a glance

EIN
542153449
IRS 990 coverage
2023–2025
Forms available
Form 990 2025, Form 990-EZ 2022, Form 990-N 2020
Location
Burnsville, MN, USA
Phone
9526831878
Rating
68
Verdict
SUPPORTED
Rating confidence
Moderate
Sector
Professional Societies, Associations

Official website

Reported finances

Revenue
$946,221
Expenses
$616,862
Assets
$2,923,349
Liabilities
$252,803

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

Leadership & pay

12 people listed

Executive titles in this filing

  • Shaji Kumar (President)
  • Stefan Schonland (Past President)
  • Yoshiki Sekijima (Vice President)
  • Mona Johnson (Executive Director)

Highest reported compensation

  • Mona Johnson (Executive Director): $75,000 total reported compensation

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

Overview

Mission

ISA is the leading global organization dedicated to engaging with scientists, healthcare providers, patients and other stakeholders to provide education, raise awareness and advance research and multidisciplinary clinical practice for all types of amyloidosis.

What it reported doing in 2025

Symposium: The biennial International Symposium on Amyloidosis is the premier meeting to discover the latestadvancements, stay current on research, and network with clinicians in the amyloidosis field. These meetingsbring together physicians and scientists to share ideas and advance the science of amyloidosis and protein-folding diseases. Symposia are held in even-numbered years.

Operating model

Revenue model
Donor-supported. 85% of the money available for current operations came from contributions and gifts.
Distribution model
Hybrid. The nonprofit split its reported program spending across 78% for direct work, and 22% for grants.

The verdict

SUPPORTED - The filed numbers largely add up and most voting board members are independent. A relatively small share of available resources goes toward mission work and a relatively small share of total spending goes to programs.

Rating breakdown

  • Financial Efficiency: 44
  • Transparency & Controls: 77
  • Accountability: 95
  • Sustainability: 72
  • Growth: 100

Detailed rating inputs

Financial Efficiency

  • Mission deployment rate: 43.4%; rating input score 43
  • Program expense ratio: 59.4%; rating input score 59
  • Fundraising efficiency: Limited

Transparency & Controls

  • Consistency checks: 100%; rating input score 100; 63rd percentile among comparable filings
  • Pay-setting controls: Limited
  • Foreign activity oversight: 1 of 8 controls in place; rating input score 12
    • Claims monitoring procedures: Pass
    • Requires narrative reports: Limited
    • Conducts field audits: Limited
    • May suspend future funding: Limited
    • Requires financial reports: Limited
    • Conducts site visits: Limited
    • Requires grant agreements: Limited
    • May require repayment: 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: 7 of 8 controls in place; rating input score 88
    • Conflict-of-interest policy: Pass
    • Whistleblower policy: Pass
    • Document-retention policy: Pass
    • CEO compensation review process: Fail
    • 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: 34.8%; rating input score 85; 85th percentile among comparable filings
  • Total-asset coverage ratio: 4.74; rating input score 83; 83rd percentile among comparable filings
  • Liabilities to assets ratio: 0.09; rating input score 37; 37th percentile among comparable filings
  • Officer compensation ratio: 12.2%; rating input score 31; 31st percentile among comparable filings

Growth

  • Program expense growth: 8.8% per year; rating input score 100; 53rd percentile among comparable filings
  • Revenue growth: 39.8% per year; rating input score 100; 94th percentile among comparable filings
  • Asset growth: 58.3% per year; rating input score 100; 96th percentile among comparable filings

Details

  • Where the money goes: 43.4% of revenue deployed · 59.4% of spending went to programs
  • Governance: 12 of 12 board members independent · 7 of 8 filing controls reported
  • Programs: 5 filed program accomplishments · $366K in reported program spending
  • Leadership: top reported pay $75K · 12 people listed
  • Consistency: 24 of 24 current checks pass
  • Schedules: 5 filed schedules · includes major donors and foreign activity
  • Filing history: 3 filing years from 2023 to 2025
  • Contacts: How to reach this organization
  • Money network: 1 filed money-flow record
  • 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.

  • Moderate — Financial Efficiency: Mission deployment rate scored 43/100.
  • Review — Financial Efficiency: Program expense ratio scored 59/100.
  • Review — Accountability: Governance controls: CEO compensation review process not reported.
  • Moderate — Sustainability: Officer compensation ratio scored 31/100.
  • Moderate — Sustainability: Liabilities to assets ratio scored 37/100.