Care-for-rare America Inc

Nonprofit profile at a glance

EIN
841825399
IRS 990 coverage
2020–2023
Forms available
Form 990 2023, Form 990-N 2019
Location
Newton, MA, USA
Phone
6176306900
Rating
68
Verdict
SUPPORTED
Rating confidence
Moderate
Sector
Pediatrics

Reported finances

Revenue
$16,430
Expenses
$19,055
Assets
$653,764
Liabilities
$0

Source: IRS Form 990. Selected filing: tax year 2023. Amounts in USD.

Leadership & pay

3 people listed

Executive titles in this filing

  • CHRISTOPH KLEIN (PRESIDENT AND DIRECTOR)
  • SCOTT SNAPPER (VICE PRESIDENT CLERK AND DIRECTOR)

People named in this filing

  • CHRISTOPH KLEIN (PRESIDENT AND DIRECTOR)
  • THOMAS JASCHKE (TREASURER AND DIRECTOR)
  • SCOTT SNAPPER (VICE PRESIDENT CLERK AND DIRECTOR)

Selected names, not a complete roster or a statement of current roles. Open leadership details for the complete filed list.

Source: IRS Form 990. Selected filing: tax year 2023. Names and roles reflect this filing, not necessarily current officeholders.

Overview

Mission

Supporting research in rare pediatric diseases and the development of treatments for these diseases; fostering the education and training of research scientists clinicians and students; supporting care for children with rare and complex diseases.

What it reported doing in 2023

The international Care-for-Rare Alliance is a network of renowned doctors scientists researchers and clinicians committed to helping children with rare diseases through translational and interdisciplinary collaboration. We support increased research on inborn errors of immunity IEI which may be present with severe or recurrent infections known as primary immunodeficiency diseases PID. With robust and growing partnerships in the Middle East Northern Africa Southeast Asia and South America many Alliance partners also focus their research collaborations on rare diseases of the blood bone marrow and the immune system. One of the most successful initiatives of the Alliance is the VEOIBD Consortium.

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

SUPPORTED - The filed numbers largely add up and most voting board members are independent. A relatively small share of available resources goes toward mission work and a relatively small share of total spending goes to programs.

Rating breakdown

  • Financial Efficiency: 48
  • Transparency & Controls: 92
  • Accountability: 88
  • Sustainability: 62
  • Growth: 20

Detailed rating inputs

Financial Efficiency

  • Mission deployment rate: 57.3%; rating input score 57
  • Program expense ratio: 49.4%; rating input score 49
  • Fundraising efficiency: Limited

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: Limited
  • Major donor itemization: Yes; rating input score 100
  • Related-party transparency: Limited

Accountability

  • Independent voting board: 100%; rating input score 100; 64th percentile among comparable filings
  • Governance controls: 5 of 7 controls in place; rating input score 71
    • Conflict-of-interest policy: Pass
    • Whistleblower policy: Pass
    • Document-retention policy: Pass
    • CEO compensation review process: NotApplicable
    • 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%; rating input score 45; 45th percentile among comparable filings
  • Total-asset coverage ratio: 34.31; rating input score 88; 88th percentile among comparable filings
  • Liabilities to assets ratio: 0; rating input score 69; 69th percentile among comparable filings
  • Officer compensation ratio: 0%; rating input score 60; 60th percentile among comparable filings

Growth

  • Program expense growth: -13.5% per year; rating input score 0; 24th percentile among comparable filings
  • Revenue growth: -43% per year; rating input score 0; 10th percentile among comparable filings
  • Asset growth: 27.7% per year; rating input score 100; 94th percentile among comparable filings

Details

  • Where the money goes: 57.3% of revenue deployed · 49.4% of spending went to programs
  • Governance: 3 of 3 board members independent · 5 of 7 filing controls reported
  • Programs: 3 filed program accomplishments · $9K in reported program spending
  • Leadership: top reported pay $0 · 3 people listed
  • Consistency: 41 of 41 current checks pass
  • Schedules: 3 filed schedules · includes major donors
  • Filing history: 3 filing years from 2020 to 2023
  • Contacts: How to reach this organization
  • 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.
  • Staff and benefit plans: Retirement and health plans the organization files with the Department of Labor, and the people in them.

Key Signals

Signals prioritize questions for review. They are not findings of misconduct.

  • Review — Financial Efficiency: Mission deployment rate scored 57/100.
  • Moderate — Financial Efficiency: Program expense ratio scored 49/100.
  • High — Growth: Program expense growth scored 0/100.
  • High — Growth: Revenue growth scored 0/100.
  • Review — Accountability: Governance controls: Independent financial-statement audit not reported.
  • Moderate — Sustainability: Operating margin scored 45/100.