Skip to the page content
Your donations
Passes our checks

Cystinosis Research Network Incorporated

EIN 04-3323789 · Lake Forest, IL

Public records show a registered, tax-exempt organization in good standing.

LegitimacyPassesRegistration and standingFinancial healthStrong100 out of 100GovernanceGood84 out of 100Impact evidenceDescribes programsHow well its results are evidenced

What it says it does

THE CYSTINOSIS RESEARCH NETWORK IS AN ALL VOLUNTEER, NON-PROFIT ORGANIZATION DEDICATED TO SUPPORTING AND ADVOCATING RESEARCH, PROVIDING FAMILY ASSISTANCE AND EDUCATING THE PUBLIC AND MEDICAL COMMUNITIES ABOUT CYSTINOSIS.

Income
$646,021
Spending
$356,700
Spent on programs
75%
Reserves
17.3 months of spending
Largest source of income
donations and private grants, 98%
Employees
0
Volunteers
20

Source: Form 990 for the year ending December 31, 2024, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Financial health

Strong: 100 out of 100. Higher than 85% of charities in its peer group (education, $250k to $1m).

  • Reserves

    35 of 35

    Spendable reserves would cover 17.3 months of spending.

  • Debt

    20 of 20

    It owes 7% of what it owns.

  • Living within its means

    15 of 15

    Income exceeded spending by 45% of income.

  • Income trend

    15 of 15

    Income rose 26% on the year before.

  • Spending floor

    15 of 15

    75% of spending went to programs and raising each dollar of donations cost 3 cents.

Source: Form 990 for the year ending December 31, 2024, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Governance

Good: 84 out of 100. Higher than 74% of charities in its peer group (education, $250k to $1m).

  • Independent board

    25 of 25

    13 of 13 voting board members are independent.

  • Conflict of interest policy

    15 of 15

    Has a written conflict of interest policy.

  • Whistleblower policy

    0 of 8

    Reports no written whistleblower policy.

  • Record keeping policy

    0 of 7

    Reports no written policy on keeping and destroying records.

  • Board minutes

    5 of 5

    Keeps minutes of board meetings.

  • Board sees the tax return

    10 of 10

    Gave the board a copy of this return before filing it.

  • Independent check of accounts

    15 of 15

    Its accounts were audited by an independent accountant.

  • No reported misuse

    10 of 10

    Reports no diversion of assets, excess benefits or loans to insiders.

Source: Form 990 for the year ending December 31, 2024, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Impact evidence

Describes programs. Its tax return describes what it does but we have found no measurable results in it.

Programs described in its return (3)
  1. $55,791 spent. THE ORGANIZATION ESTABLISHES AND FUNDS FELLOWSHIPS AND RESEARCH GRANTS FOCUSING ON CLINICAL AND RESEARCH TRAINING IN CYSTINOSIS.
  2. $187,667 spent. THE ORGANIZATION RAISES AWARENESS AND REINFORCES STRONG RELATIONSHIPS THROUGH REPRESENTATION AT NATIONAL MEDICAL CONFERENCES, AFFILIATION WITH OTHER ORGANIZATIONS, PUBLICATION OF PERIODIC NEWSLETTERS AND AWARDS OR EDUCATIONAL SCHOLARSHIPS TO INDIVIDUALS WITH CYSTINOSIS AND THEIR SIBLINGS.
  3. $23,839 spent. THE ORGANIZATION PROVIDES INFORMATION AND OPPORTUNITIES TO NETWORK FOR INDIVIDUALS WITH CYSTINOSIS AND THEIR FAMILIES THROUGH PARTICIPATION IN A BIENNIAL CONFERENCE ON CYSTINOSIS. IT ALSO SUPPORTS NEWLY DIAGNOSED AND EXISTING FAMILIES BY PROVIDING ACCESS TO WORLD EXPERTS VIA ADVISORY BOARDS, MODERATION OF AN EMAIL SUPPORT GROUP AND INFORMATION PACKETS.

Source: Form 990 for the year ending December 31, 2024, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Legitimacy checks

  1. Is it registered with the IRS? Passed.

    Listed in the IRS master file of tax-exempt organizations as a 501(c)(3) charitable organization.

    Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.

  2. Has the IRS revoked its tax-exempt status? Passed.

    Not on the IRS automatic revocation list.

    Source: Automatic revocation of exemption list, Internal Revenue Service, file dated November 6, 2026.

  3. Are donations tax-deductible? Passed.

    On the IRS list of organizations eligible to receive tax-deductible contributions.

    Source: Publication 78 data: organizations eligible for tax-deductible contributions, Internal Revenue Service, file dated October 13, 2026.

  4. Is it keeping up with its IRS filings? Passed.

    Most recent return on file covers the year ending December 2024.

    Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.

  5. How long has it been tax-exempt? Passed.

    Recognized by the IRS since November 1996.

    Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.

  6. Is it in good standing with state regulators? Passed.

    Not on California's list of charities barred from soliciting. Other states are not yet checked.

    Source: May Not Operate or Solicit for Charitable Purposes list, California Attorney General, Registry of Charities and Fundraisers, file dated November 4, 2026.

Ratings and checks are our reading of public records, using the published method. They are not a statement about anyone's honesty. If you work for this organization, you can send corrections or results, confirm you want gifts through Veridonate, or ask to be removed from giving.