National Gaucher Foundation Inc

Nonprofit profile at a glance

EIN
521350226
IRS 990 coverage
2010–2025
Forms available
Form 990 2025
Location
Rockville, MD, USA
Phone
8005043189
Rating
73
Verdict
SUPPORTED
Rating confidence
Moderate
Sector
Specifically Named Diseases

Official website

Reported finances

Revenue
$316,069
Expenses
$292,255
Assets
$825,417
Liabilities
$1,611

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

Leadership & pay

2 people listed

Executive titles in this filing

  • BRIAN BERMAN (PRESIDENT)

People named in this filing

  • BRIAN BERMAN (PRESIDENT)
  • ROBIN ELY (CLINICAL 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 2025. Names and roles reflect this filing, not necessarily current officeholders.

Overview

Mission

Raise funds to promote education and awareness; meet ever-increasing needs of individuals with gaucher disease and their families.

What it reported doing in 2025

Education and awareness initiatives throughout the u.s. The program includes a website with expansive content that is regularly updated, monthly blog posts on gaucher disease from medical thought leaders, monthly e-newsletters, human interest stories in film, digital and written materials, an annual educational symposium for patients and physicians, a carrier screening program as well as services to patients (with information, support, and resources) to help them achieve and maintain their optimal health.

Operating model

Revenue model
Donor-supported. 92% 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 the filed numbers largely add up. Some filing-based governance responses are negative or unanswered and program spending has declined or grown slowly.

Rating breakdown

  • Financial Efficiency: 66
  • Transparency & Controls: 85
  • Accountability: 88
  • Sustainability: 58
  • Growth: 20

Detailed rating inputs

Financial Efficiency

  • Mission deployment rate: 65.5%; rating input score 65
  • Program expense ratio: 67.4%; rating input score 67
  • Fundraising efficiency: $29.46 raised per $1 spent on fundraising; rating input score 64; 64th percentile among comparable filings

Transparency & Controls

  • Consistency checks: 90.9%; rating input score 91; 15th percentile among comparable filings
  • Pay-setting controls: Limited
  • Foreign activity oversight: Limited
  • Grant itemization coverage: Limited
  • 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: 5 of 7 controls in place; rating input score 71
    • Conflict-of-interest policy: Pass
    • Whistleblower policy: Pass
    • 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: Fail
    • Independent financial-statement audit: Fail

Sustainability

  • Operating margin: 7.5%; rating input score 52; 52nd percentile among comparable filings
  • Total-asset coverage ratio: 2.82; rating input score 67; 67th percentile among comparable filings
  • Liabilities to assets ratio: 0; rating input score 48; 48th percentile among comparable filings
  • Officer compensation ratio: 0%; rating input score 67; 67th percentile among comparable filings

Growth

  • Program expense growth: -11.3% per year; rating input score 0; 10th percentile among comparable filings
  • Revenue growth: -7.5% per year; rating input score 0; 6th percentile among comparable filings
  • Asset growth: 4.8% per year; rating input score 100; 43rd percentile among comparable filings

Details

  • Where the money goes: 65.5% of revenue deployed · 67.4% of spending went to programs
  • Governance: 3 of 3 board members independent · 5 of 7 filing controls reported
  • Programs: 1 filed program accomplishment · $197K in reported program spending
  • Leadership: top reported pay $0 · 2 people listed
  • Consistency: 19 of 19 current checks pass
  • Schedules: 4 filed schedules · includes major donors
  • Filing history: 15 filing years from 2010 to 2025
  • Contacts: How to reach this organization
  • Money network: Resolved incoming and outgoing counterparties from filed money flows.
  • 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 7 not reported.
  • High — Growth: Program expense growth scored 0/100.
  • High — Growth: Revenue growth scored 0/100.
  • Review — Sustainability: Operating margin scored 52/100.
  • Moderate — Sustainability: Liabilities to assets ratio scored 48/100.