Rare-x

Nonprofit profile at a glance

EIN
842298259
IRS 990 coverage
2020–2021
Forms available
Form 990 2021, Form 990-N 2019
Location
Washington, DC, USA
Phone
9494580836
Rating
80
Verdict
STRONG
Rating confidence
Moderate
Sector
Alliance/Advocacy Organizations

Reported finances

Revenue
$1,701,050
Expenses
$1,681,033
Assets
$822,952
Liabilities
$329,764

Source: IRS Form 990. Selected filing: tax year 2021. Amounts in USD.

Leadership & pay

17 people listed

Executive titles in this filing

  • CHARLENE SON RIGBY (CEO)

Highest reported compensation

  • NICOLE BOICE (Executive Dir.): $148,000 total reported compensation
  • CHARLENE SON RIGBY (CEO): $50,000 total reported compensation

Source: IRS Form 990. Selected filing: tax year 2021. Names and roles reflect this filing, not necessarily current officeholders.

Overview

Mission

RARE-X is a 501(c)(3) non-profit created by leaders in the fields of patient advocacy, medical research, biopharma, and technology.We are piloting a series of demonstration projects, partnering with rare disease communities, to apply technology proven in other large-scale public health and genomic data-sharing initiatives to support the global needs of those developing treatments and caring for rare disease patients. Also, we are leveraging existing technology powered by the Broad Institute of MIT and Harvard, which will support patients (in data collection, structuring and responsible sharing), clinicians (in accelerating diagnosis and improving and tracking health outcomes), researchers and biopharma (with the data they need to identify, develop and track the impact of breakthrough treatments and cures).Additionally, we are adapting proven technologies and partnering with leading experts to create a federated data analysis platform, specifically designed by rare community leaders and

What it reported doing in 2021

RARE-X is:- piloting a series of demonstration projects, partnering with rare disease communities, to apply technology proven in other large-scale public health and genomic data-sharing initiatives to support the global needs of those developing treatments and caring for rare disease patients.- leveraging existing technology powered by the Broad Institute of MIT and Harvard, which will support patients (in data collection, structuring and responsible sharing), clinicians (in accelerating diagnosis and improving and tracking health outcomes), researchers and biopharma (with the data they need to identify, develop and track the impact of breakthrough treatments and cures).- adapting proven technologies and partnering with leading experts to create a federated data analysis platform, specifically designed by rare community leaders and scaled to support the diverse and expanding needs of rare disease research, development and care, around the world and in all communities.

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. Fundraising costs are high for each dollar raised and expenses are high relative to revenue.

Rating breakdown

  • Financial Efficiency: 77
  • Transparency & Controls: 92
  • Accountability: 83
  • Sustainability: 25
  • Growth: 80

Detailed rating inputs

Financial Efficiency

  • Mission deployment rate: 79.7%; rating input score 80
  • Program expense ratio: 80.7%; rating input score 81
  • Fundraising efficiency: $16.38 raised per $1 spent on fundraising; rating input score 49; 49th 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: Limited
  • Major donor itemization: Yes; rating input score 100
  • Related-party transparency: Limited

Accountability

  • Independent voting board: 86.7%; rating input score 87; 20th percentile among comparable filings
  • Governance controls: 7 of 9 controls in place; rating input score 78
    • Conflict-of-interest policy: Pass
    • Whistleblower policy: Pass
    • Document-retention policy: Pass
    • CEO compensation review process: Pass
    • Other executive compensation review process: Pass
    • Form 990 shared with the board: Pass
    • Board meeting minutes documented: Pass
    • Audit committee oversight: Missing
    • Independent financial-statement audit: Fail

Sustainability

  • Operating margin: 1.2%; rating input score 29; 29th percentile among comparable filings
  • Total-asset coverage ratio: 0.49; rating input score 19; 19th percentile among comparable filings
  • Liabilities to assets ratio: 0.4; rating input score 19; 19th percentile among comparable filings
  • Officer compensation ratio: 11.8%; rating input score 31; 31st percentile among comparable filings

Growth

  • Program expense growth: 108% per year; rating input score 100; 99th percentile among comparable filings
  • Revenue growth: 47.3% per year; rating input score 100; 95th percentile among comparable filings
  • Asset growth: -6% per year; rating input score 0; 6th percentile among comparable filings

Details

  • Where the money goes: 79.7% of revenue deployed · 80.7% of spending went to programs
  • Governance: 13 of 15 board members independent · 7 of 9 filing controls reported
  • Programs: 1 filed program accomplishment · $1.4M in reported program spending
  • Leadership: top reported pay $148K · 17 people listed
  • Consistency: 25 of 25 current checks pass
  • Schedules: 4 filed schedules · includes major donors
  • Filing history: 2 filing years from 2020 to 2021
  • Contacts: How to reach this organization
  • Money network: 2 filed money-flow records
  • 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: Fundraising efficiency scored 49/100.
  • High — Sustainability: Operating margin scored 29/100.
  • High — Sustainability: Total-asset coverage ratio scored 19/100.
  • Review — Accountability: Governance controls: Independent financial-statement audit not reported.
  • High — Growth: Asset growth scored 0/100.
  • High — Sustainability: Liabilities to assets ratio scored 19/100.
  • Moderate — Sustainability: Officer compensation ratio scored 31/100.