Forgotten Diseases Research Foundation

Nonprofit profile at a glance

EIN
454470463
IRS 990-EZ coverage
2020–2025
Forms available
Form 990-EZ 2025
Location
Santa Clara, CA, USA
Phone
4085295755
Rating
89
Verdict
STRONG
Rating confidence
Moderate
Sector
Medical Research N.E.C.

Official website

Reported finances

Revenue
$136,775
Expenses
$100,328
Assets
$156,872
Liabilities
$0

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

Leadership & pay

4 people listed

Executive titles in this filing

  • MARTIN O'CONNOR (PRESIDENT)

People named in this filing

  • MARTIN O'CONNOR (PRESIDENT)
  • NATALIA LUKOMSKI QUIROZ (SECRETARY)
  • VALERIE NATALE (TREASURER)

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

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

Overview

Mission

Forgotton diseases research foundation is a nonprofit dedicated to very rare disorders. The goals are to improve the quality of life of patients with these disorders and to improve research practices in the following ways: -creating a single place for disseminating information about very rare diseases. -helping people diagnose very rare diseases. -discovering the most robust scientific approaches to studying rare diseases. -disseminating information to families that will help them care for sick family members. -educating the public about what can be learned from the study of rare diseases. -making physicians more knowledgeable about these diseases.

What it reported doing in 2025

Created website which is large repository of growth information for children around the world including 35 countries. Submitted large study for publication. The study compares growth in children around the world with the world health organization's international growth curves.

Operating model

Revenue model
Donor-supported. 99% 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

STRONG - A large share of available resources goes toward mission work and the filed numbers largely add up. Reported officer compensation is a large share of total spending, which may reflect staffing concentration.

Rating breakdown

  • Financial Efficiency: 82
  • Transparency & Controls: 100
  • Sustainability: 67
  • Growth: 100

Detailed rating inputs

Financial Efficiency

  • Mission deployment rate: 72.2%; rating input score 72
  • Program expense ratio: 98.2%; rating input score 98

Transparency & Controls

  • Consistency checks: 100%; rating input score 100; 52nd percentile among comparable filings
  • Major donor itemization: Yes; rating input score 100

Sustainability

  • Operating margin: 26.6%; rating input score 79; 79th percentile among comparable filings
  • Total-asset coverage ratio: 1.56; rating input score 73; 73rd percentile among comparable filings
  • Liabilities to assets ratio: 0; rating input score 74; 74th percentile among comparable filings
  • Officer compensation ratio: 86.1%; rating input score 0; 0th percentile among comparable filings

Growth

  • Program expense growth: 35.1% per year; rating input score 100; 85th percentile among comparable filings
  • Revenue growth: 24% per year; rating input score 100; 86th percentile among comparable filings
  • Asset growth: 4.4% per year; rating input score 100; 41st percentile among comparable filings

Details

  • Where the money goes: 72.2% of revenue deployed · 98.2% of spending went to programs
  • Governance: Filed governance answers
  • Accomplishments: 1 filed program accomplishment · $99K in reported program spending
  • Leadership: top reported pay $0 · 4 people listed
  • Consistency: 7 of 7 current checks pass
  • Schedules: 3 filed schedules
  • Filing history: 6 filing years from 2020 to 2025
  • Contacts: How to reach this organization
  • Money network: 2 filed money-flow records
  • 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.

  • High — Sustainability: Officer compensation ratio scored 0/100.