CDG Care
Nonprofit profile at a glance
- EIN
- 810769799
- IRS 990 coverage
- 2022–2025
- Forms available
- Form 990 2025, Form 990-EZ 2020, Form 990-N 2017
- Location
- Colorado Springs, CO, USA
- Phone
- 3142494060
- Rating
- 82
- Verdict
- STRONG
- Rating confidence
- Moderate
- Sector
- Specifically Named Diseases Research
Reported finances
- Revenue
- $706,435
- Expenses
- $642,412
- Assets
- $877,369
- Liabilities
- $105,871
Source: IRS Form 990. Selected filing: tax year 2025. Amounts in USD.
Leadership & pay
13 people listed
Executive titles in this filing
- Andrea Miller (Executive Director)
Highest reported compensation
- Andrea Miller (Executive Director): $70,000 total reported compensation
Source: IRS Form 990. Selected filing: tax year 2025. Names and roles reflect this filing, not necessarily current officeholders.
Overview
Mission
To promote greater awareness and understanding of CDG, to provide information and support to families affected by CDG, and to advocate for and fund scientific research to advance treatments for all CDGs.
What it reported doing in 2025
Research and Development: In 2025, CDG CARE significantly expanded its investment in patient-centered research through direct funding of basic, translational, and therapeutic research initiatives focused on Congenital Disorders of Glycosylation (CDG). Research support included contracts with academic institutions and biotechnology partners to advance drug repurposing, gene therapy, natural history, and disease modeling across multiple CDG types. The organization also launched the CDG Clinical & Research Network (CDG CRN) to strengthen international collaboration among clinicians, researchers, industry partners, and patient advocacy organizations while advancing patient-prioritized research initiatives. In addition, CDG CARE was awarded a five-year Rare As One Network grant from the Chan Zuckerberg Initiative to further develop research infrastructure, patient engagement, and collaborative scientific programs for the global CDG community.
Operating model
- Revenue model
- Donor-supported. 97% of the money available for current operations came from contributions and gifts.
- Distribution model
- Hybrid. The nonprofit split its reported program spending across 49% for direct work, and 51% for grants.
The verdict
STRONG - 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 expenses are high relative to revenue.
Rating breakdown
- Financial Efficiency: 79
- Transparency & Controls: 94
- Accountability: 74
- Sustainability: 49
- Growth: 100
Detailed rating inputs
Financial Efficiency
- Mission deployment rate: 78.7%; rating input score 79
- Program expense ratio: 85.9%; rating input score 86
- Fundraising efficiency: $24.95 raised per $1 spent on fundraising; rating input score 61; 61st percentile among comparable filings
Transparency & Controls
- Consistency checks: 100%; rating input score 100; 63rd percentile among comparable filings
- Pay-setting controls: Limited
- Foreign activity oversight: 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: 92.3%; rating input score 92; 27th percentile among comparable filings
- Governance controls: 4 of 8 controls in place; rating input score 50
- Conflict-of-interest policy: Pass
- Whistleblower policy: Fail
- Document-retention policy: Fail
- CEO compensation review process: Fail
- Other executive compensation review process: NotApplicable
- Form 990 shared with the board: Fail
- Board meeting minutes documented: Pass
- Audit committee oversight: Pass
- Independent financial-statement audit: Pass
Sustainability
- Operating margin: 9.1%; rating input score 54; 54th percentile among comparable filings
- Total-asset coverage ratio: 1.37; rating input score 53; 53rd percentile among comparable filings
- Liabilities to assets ratio: 0.12; rating input score 32; 32nd percentile among comparable filings
- Officer compensation ratio: 10.9%; rating input score 35; 35th percentile among comparable filings
Growth
- Program expense growth: 5.8% per year; rating input score 100; 40th percentile among comparable filings
- Revenue growth: 23.2% per year; rating input score 100; 86th percentile among comparable filings
- Asset growth: 27.9% per year; rating input score 100; 88th percentile among comparable filings
Details
- Where the money goes: 78.7% of revenue deployed · 85.9% of spending went to programs
- Governance: 12 of 13 board members independent · 4 of 8 filing controls reported
- Programs: 3 filed program accomplishments · $552K in reported program spending
- Leadership: top reported pay $70K · 13 people listed
- Consistency: 28 of 28 current checks pass
- Schedules: 5 filed schedules · includes major donors and grants
- Filing history: 4 filing years from 2022 to 2025
- Contacts: How to reach this organization
- Money network: 5 filed money-flow records
- Related organizations: 4 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.
- Review — Accountability: Governance controls: 4 of 8 not reported.
- Review — Sustainability: Operating margin scored 54/100.
- Review — Sustainability: Total-asset coverage ratio scored 53/100.
- Moderate — Sustainability: Liabilities to assets ratio scored 32/100.
- Moderate — Sustainability: Officer compensation ratio scored 35/100.