Diamond Blackfan Anemia Foundation
Nonprofit profile at a glance
- EIN
- 161459422
- IRS 990 coverage
- 2020–2025
- Forms available
- Form 990 2025
- Location
- West Seneca, NY, USA
- Phone
- 7166742818
- Rating
- 82
- Verdict
- STRONG
- Rating confidence
- Moderate
- Sector
- Fund Raising and/or Fund Distribution
Reported finances
- Revenue
- $603,747
- Expenses
- $474,761
- Assets
- $1,934,886
- Liabilities
- $0
Source: IRS Form 990. Selected filing: tax year 2025. Amounts in USD.
Leadership & pay
12 people listed
Executive titles in this filing
- DAWN BAUMGARDNER (EXECUTIVE DIRECTOR)
- KATHI VROMAN (VICE PRESIDENT)
Highest reported compensation
- DAWN BAUMGARDNER (EXECUTIVE DIRECTOR): $67,600 total reported compensation
Source: IRS Form 990. Selected filing: tax year 2025. Names and roles reflect this filing, not necessarily current officeholders.
Overview
Mission
The mission of the diamond blackfan anemia foundation is to advance research initiatives that promote a better understanding, therapeutic strategies and a cure for this rare bone marrow failure syndrome. We are dedicated to providing patient advocacy, support and education services to individuals, families and medical professionals resulting in improvements in the diagnosis, clinical treatment and management of the disorder, while enhancing the quality of life of affected families worldwide.
What it reported doing in 2025
(dba icc) a conference organized to provide a venue for the exchange of ideas and foster new collaborations among dba clinicians and scientists, document results from ongoing clinical trials and coordinate efforts for new trials, bridge the gap between clinicians and scientists working on dba to promote translational research, and encourage young clinicians and scientists to enter into dba as independent investigators.
Operating model
- Revenue model
- Donor-supported. 91% of the money available for current operations came from contributions and gifts.
- Distribution model
- Hybrid. The nonprofit split its reported program spending across 55% for direct work, and 45% for grants.
- Includes noncash contributions: Reported contributions include donated property or goods.
The verdict
STRONG - A large share of available resources goes toward mission work and the filed numbers largely add up. The filing reports few safeguards for money sent abroad and some filing-based governance responses are negative or unanswered.
Rating breakdown
- Financial Efficiency: 83
- Transparency & Controls: 78
- Accountability: 85
- Sustainability: 72
- Growth: 100
Detailed rating inputs
Financial Efficiency
- Mission deployment rate: 75.6%; rating input score 76
- Program expense ratio: 93.2%; rating input score 93
- Fundraising efficiency: $116.43 raised per $1 spent on fundraising; rating input score 86; 86th percentile among comparable filings
Transparency & Controls
- Consistency checks: 92.3%; rating input score 92; 18th percentile among comparable filings
- Pay-setting controls: Limited
- Foreign activity oversight: 3 of 8 controls in place; rating input score 38
- Claims monitoring procedures: Pass
- Requires narrative reports: Pass
- Conducts field audits: Fail
- May suspend future funding: Fail
- Requires financial reports: Pass
- Conducts site visits: Fail
- Requires grant agreements: Fail
- May require repayment: Fail
- Grant itemization coverage: 96.8%; rating input score 97; 48th percentile among comparable filings
- Major donor itemization: Yes; rating input score 100
- Related-party transparency: Limited
Accountability
- Independent voting board: 83.3%; rating input score 83; 22nd 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: 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: Fail
Sustainability
- Operating margin: 21.4%; rating input score 74; 74th percentile among comparable filings
- Total-asset coverage ratio: 4.08; rating input score 81; 81st percentile among comparable filings
- Liabilities to assets ratio: 0; rating input score 88; 88th percentile among comparable filings
- Officer compensation ratio: 14.2%; rating input score 26; 26th percentile among comparable filings
Growth
- Program expense growth: 16.5% per year; rating input score 100; 74th percentile among comparable filings
- Revenue growth: 7.1% per year; rating input score 100; 49th percentile among comparable filings
- Asset growth: 8.2% per year; rating input score 100; 49th percentile among comparable filings
Details
- Where the money goes: 75.6% of revenue deployed · 93.2% of spending went to programs
- Governance: 10 of 12 board members independent · 7 of 8 filing controls reported
- Programs: 4 filed program accomplishments · $442K in reported program spending
- Leadership: top reported pay $68K · 12 people listed
- Consistency: 23 of 24 current checks pass · 1 finding to review
- Schedules: 8 filed schedules · includes major donors, foreign activity, and grants
- Filing history: 5 filing years from 2020 to 2025
- Contacts: How to reach this organization
- Money network: 4 filed money-flow records
- Related organizations: 3 filed related-organization links
- 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 — Transparency & Controls: Foreign activity oversight: 5 of 8 not reported.
- Review — Accountability: Governance controls: Independent financial-statement audit not reported.
- Review — Transparency & Controls: Foreign grant itemization did not reconcile in the filed values.
- High — Sustainability: Officer compensation ratio scored 26/100.