Cure Rare Disease Inc

Nonprofit profile at a glance

EIN
822473513
IRS 990 coverage
2019–2024
Forms available
Form 990 2024, Form 990-EZ 2017, Form 990-T 2024
Location
Woodbridge, CT, USA
Phone
6072156401
Rating
72
Verdict
SUPPORTED
Rating confidence
Moderate
Sector
Fund Raising and/or Fund Distribution

Reported finances

Revenue
$5,335,620
Expenses
$2,307,360
Assets
$9,212,415
Liabilities
$2,733,913

Source: IRS Form 990. Selected filing: tax year 2024. Amounts in USD.

Leadership & pay

13 people listed

Executive titles in this filing

  • RICHARD HORGAN (FOUNDER & CEO)

Highest reported compensation

  • RICHARD HORGAN (FOUNDER & CEO): $219,944 total reported compensation
  • MARK WARD (CAO): $102,686 total reported compensation

Source: IRS Form 990. Selected filing: tax year 2024. Names and roles reflect this filing, not necessarily current officeholders.

Overview

Mission

Our mission is to enable and finance the development of life-saving genetic medicines for ultra-rare patient populations previously deemed too rare to treat. To realize this, our unique ecosystems facilitates collaboration between world-renowned researchers and clinicians, policy experts and our generous donors. Together, we are fundamentally changing the ultra-rare disease experience and burden for millions ofpeople around the world with our discoveries and methods - while bringing hope to patients waiting for a cure.

What it reported doing in 2024

To advance the development of ultra-rare disease therapeutics.

Operating model

Revenue model
Donor-supported. 88% 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 total spending goes to programs and the filed numbers largely add up. A relatively small share of available resources goes toward mission work and few specific pay-setting methods are documented in the filing; unanswered boxes are not proof of absence.

Rating breakdown

  • Financial Efficiency: 62
  • Transparency & Controls: 65
  • Accountability: 95
  • Sustainability: 74
  • Growth: 100

Detailed rating inputs

Financial Efficiency

  • Mission deployment rate: 40.6%; rating input score 41
  • Program expense ratio: 91.8%; rating input score 92
  • Fundraising efficiency: $50.4 raised per $1 spent on fundraising; rating input score 78; 78th percentile among comparable filings

Transparency & Controls

  • Consistency checks: 100%; rating input score 100; 63rd percentile among comparable filings
  • Pay-setting controls: 0 of 6 controls in place; rating input score 0
    • Compensation committee: Missing
    • Independent consultant: Missing
    • Other Form 990s reviewed: Missing
    • Written employment contract: Missing
    • Compensation survey or study: Missing
    • Board or committee approval: Missing
  • Foreign activity oversight: Limited
  • Grant itemization coverage: Limited
  • Major donor itemization: Yes; rating input score 100
  • Related-party transparency: Limited

Accountability

  • Independent voting board: 91.7%; rating input score 92; 22nd percentile among comparable filings
  • Governance controls: 8 of 9 controls in place; rating input score 100
    • Conflict-of-interest policy: Pass
    • Whistleblower policy: Pass
    • Document-retention policy: Pass
    • CEO compensation review process: Pass
    • Other executive compensation review process: Limited
    • Form 990 shared with the board: Pass
    • Board meeting minutes documented: Pass
    • Audit committee oversight: Pass
    • Independent financial-statement audit: Pass

Sustainability

  • Operating margin: 56.8%; rating input score 94; 94th percentile among comparable filings
  • Total-asset coverage ratio: 3.99; rating input score 80; 80th percentile among comparable filings
  • Liabilities to assets ratio: 0.3; rating input score 34; 34th percentile among comparable filings
  • Officer compensation ratio: 14%; rating input score 20; 20th percentile among comparable filings

Growth

  • Program expense growth: 12.8% per year; rating input score 100; 72nd percentile among comparable filings
  • Revenue growth: 27.6% per year; rating input score 100; 93rd percentile among comparable filings
  • Asset growth: 39.1% per year; rating input score 100; 96th percentile among comparable filings

Details

  • Where the money goes: 40.6% of revenue deployed · 91.8% of spending went to programs
  • Governance: 11 of 12 board members independent · 8 of 9 filing controls reported
  • Programs: 1 filed program accomplishment · $2.1M in reported program spending
  • Leadership: top reported pay $220K · 13 people listed · 0 of 6 pay-setting controls reported
  • Consistency: 33 of 33 current checks pass
  • Schedules: 7 filed schedules · includes major donors and executive pay
  • Filing history: 6 filing years from 2019 to 2024
  • Contacts: How to reach this organization
  • Money network: 2 filed money-flow records
  • Related organizations: 1 filed related-organization link
  • 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: Mission deployment rate scored 41/100.
  • High — Transparency & Controls: Pay-setting controls scored 0/100.
  • High — Sustainability: Officer compensation ratio scored 20/100.
  • Moderate — Sustainability: Liabilities to assets ratio scored 34/100.