Haystack Project Inc
Nonprofit profile at a glance
- EIN
- 833367375
- IRS 990 coverage
- 2020–2025
- Forms available
- Form 990 2025
- Location
- Severna Park, MD, USA
- Phone
- 6143546036
- Rating
- 85
- Verdict
- STRONG
- Rating confidence
- Moderate
- Sector
- Alliance/Advocacy Organizations
Reported finances
- Revenue
- $448,047
- Expenses
- $521,673
- Assets
- $328,483
- Liabilities
- $0
Source: IRS Form 990. Selected filing: tax year 2025. Amounts in USD.
Leadership & pay
10 people listed
Executive titles in this filing
- KARA BERASI (CEO)
Highest reported compensation
- KARA BERASI (CEO): $36,000 total reported compensation
Source: IRS Form 990. Selected filing: tax year 2025. Names and roles reflect this filing, not necessarily current officeholders.
Overview
Mission
Haystack project brings together stakeholders connected to rare and ultra rare medical conditions to educate them and assist them with their self advocacy efforts.
What it reported doing in 2025
The organization brings together patient organizations representing patients suffering from or caring for patients with extremely rare diseases. This is accomplished through educating policymakers and stakeholders about the barriers fda processes and insurance frameworks create and perpetuate in rare and ultra-rare diseases and help them recognize the circumstances of extremely rare conditions and treatments and expand incentives critical to ensuring they can reach patients. Policy initiatives and rare disease priorities: haystack project works with patients to help them learn how to advocate for their communities and improve. Modernization of rare disease clinical trials: work focused on rethinking clinical trials for rare diseases. Patient education & engagement: speaker series where we bring various experts to speak to issues related to rare diseases. Member organizations are able to listen and ask questions. Also conduct member meetings to educate about current events, haystack initiatives, and help answer questions.
Operating model
- Revenue model
- Donor-supported. 100% 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. Some filing-based governance responses are negative or unanswered and expenses are high relative to revenue.
Rating breakdown
- Financial Efficiency: 89
- Transparency & Controls: 92
- Accountability: 78
- Sustainability: 28
- Growth: 100
Detailed rating inputs
Financial Efficiency
- Mission deployment rate: 100%; rating input score 100
- Program expense ratio: 99.5%; rating input score 100
- Fundraising efficiency: Limited
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: 90%; rating input score 90; 27th percentile among comparable filings
- Governance controls: 5 of 8 controls in place; rating input score 62
- Conflict-of-interest policy: Pass
- Whistleblower policy: Pass
- Document-retention policy: Fail
- 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: Missing
- Independent financial-statement audit: Fail
Sustainability
- Operating margin: -16.4%; rating input score 14; 14th percentile among comparable filings
- Total-asset coverage ratio: 0.63; rating input score 29; 29th percentile among comparable filings
- Liabilities to assets ratio: 0; rating input score 77; 77th percentile among comparable filings
- Officer compensation ratio: 6.9%; rating input score 29; 29th percentile among comparable filings
Growth
- Program expense growth: 15.4% per year; rating input score 100; 77th percentile among comparable filings
- Revenue growth: 5.3% per year; rating input score 100; 49th percentile among comparable filings
- Asset growth: 9.2% per year; rating input score 100; 60th percentile among comparable filings
Details
- Where the money goes: 100% of revenue deployed · 99.5% of spending went to programs
- Governance: 9 of 10 board members independent · 5 of 8 filing controls reported
- Programs: 1 filed program accomplishment · $519K in reported program spending
- Leadership: top reported pay $36K · 10 people listed
- Highest-paid contractors: 2 contractors listed · $418K reported
- Consistency: 18 of 18 current checks pass
- Schedules: 5 filed schedules · includes major donors
- Filing history: 6 filing years from 2020 to 2025
- Contacts: How to reach this organization
- Money network: 1 filed money-flow record
- 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.
- Review — Accountability: Governance controls: 2 of 7 not reported.
- High — Sustainability: Operating margin scored 14/100.
- High — Sustainability: Total-asset coverage ratio scored 29/100.
- High — Sustainability: Officer compensation ratio scored 29/100.