The Fibrous Dysplasia Foundation
Nonprofit profile at a glance
- EIN
- 020715210
- IRS 990 coverage
- 2017–2024
- Forms available
- Form 990 2024, Form 990-EZ 2016
- Location
- Bethesda, MD, USA
- Phone
- 3014678979
- Rating
- 82
- Verdict
- STRONG
- Rating confidence
- Moderate
- Sector
- Voluntary Health Associations & Medical Disciplines N.E.C.
Reported finances
- Revenue
- $245,764
- Expenses
- $270,098
- Assets
- $243,546
- Liabilities
- $237,726
Source: IRS Form 990. Selected filing: tax year 2024. Amounts in USD.
Leadership & pay
11 people listed
Highest reported compensation
- ADRIENNE MCBRIDE (EXECUTIVE DI): $88,857 total reported compensation
Source: IRS Form 990. Selected filing: tax year 2024. Names and roles reflect this filing, not necessarily current officeholders.
Overview
Mission
The fibrous dysplasia foundation serves people affected with fibrous dysplasia/mccune-albright syndrome through programs of research, education, awareness and support.
What it reported doing in 2024
Fd/mas alliance, in addition to its other program services: - maintains a comprehensive, up-to-date repository of information for patients, caregivers, and medical practitioners, including recent research publications, diagnosis and treatment guidelines, relevant funding opportunities for basic and clinical investigators, and information on ongoing clinical trials in fd/mas. - expands and strengthens the network of fd/mas researchers and patient advocates worldwide through education, communications, and alliance- building initiatives, including a biennial conference. - remotely attends or, when suitable, travels to both domestic and international scientific gatherings to advocate for fd/mas research opportunities to broaden the network of involved researchers and other stakeholders working on potential therapies. - provides mentoring and community building among other fd/mas patient organizations to enhance the effectiveness and coordination of these groups worldwide.
Operating model
- Revenue model
- Donor-supported. 97% 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. Fundraising costs are high for each dollar raised and some filing-based governance responses are negative or unanswered.
Rating breakdown
- Financial Efficiency: 75
- Transparency & Controls: 92
- Accountability: 90
- Sustainability: 24
- Growth: 100
Detailed rating inputs
Financial Efficiency
- Mission deployment rate: 82.2%; rating input score 82
- Program expense ratio: 74.3%; rating input score 74
- Fundraising efficiency: $11.16 raised per $1 spent on fundraising; rating input score 42; 42nd percentile among comparable filings
Transparency & Controls
- Consistency checks: 100%; rating input score 100; 64th 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; 63rd percentile among comparable filings
- Governance controls: 6 of 8 controls in place; rating input score 75
- Conflict-of-interest policy: Pass
- Whistleblower policy: Pass
- Document-retention policy: Pass
- CEO compensation review process: NotApplicable
- Other executive compensation review process: Fail
- Form 990 shared with the board: Pass
- Board meeting minutes documented: Pass
- Audit committee oversight: Pass
- Independent financial-statement audit: Fail
Sustainability
- Operating margin: -9.9%; rating input score 23; 23rd percentile among comparable filings
- Total-asset coverage ratio: 0.9; rating input score 38; 38th percentile among comparable filings
- Liabilities to assets ratio: 0.98; rating input score 5; 5th percentile among comparable filings
- Officer compensation ratio: 32.9%; rating input score 9; 9th percentile among comparable filings
Growth
- Program expense growth: 7.4% per year; rating input score 100; 63rd percentile among comparable filings
- Revenue growth: 15.8% per year; rating input score 100; 83rd percentile among comparable filings
- Asset growth: 9.4% per year; rating input score 100; 64th percentile among comparable filings
Details
- Where the money goes: 82.2% of revenue deployed · 74.3% of spending went to programs
- Governance: 11 of 11 board members independent · 6 of 8 filing controls reported
- Programs: 4 filed program accomplishments · $201K in reported program spending
- Leadership: top reported pay $89K · 11 people listed
- Consistency: 27 of 27 current checks pass
- Schedules: 5 filed schedules · includes major donors
- Filing history: 7 filing years from 2017 to 2024
- Contacts: How to reach this organization
- Money network: 2 filed money-flow records
- 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: Fundraising efficiency scored 42/100.
- Review — Accountability: Governance controls: 2 of 8 not reported.
- High — Sustainability: Operating margin scored 23/100.
- Moderate — Sustainability: Total-asset coverage ratio scored 38/100.
- High — Sustainability: Liabilities to assets ratio scored 5/100.
- High — Sustainability: Officer compensation ratio scored 9/100.