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Castleman Disease Collaborative Network

EIN 37-1510354 · Paso Robles, CA

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

LegitimacyPassesRegistration and standingFinancial healthGood87 out of 100GovernanceWeak22 out of 100Impact evidenceDescribes programsHow well its results are evidenced

What it says it does

TO DEVELOP AWARENESS OF CASTLEMAN'S DISEASE AND TO RAISE MONEY TO FUND EDUCATION AND LABORATORY RESEARCH TO DETERMINE CAUSE, TREATMENT AND ULTIMATE CURE.

Income
$979,030
Spending
$961,126
Spent on programs
87%
Reserves
37.2 months of spending
Largest source of income
donations and private grants, 96%
Employees
3

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

Good: 87 out of 100. Higher than 59% of charities in its peer group (medical research, $250k to $1m).

  • Reserves

    35 of 35

    Spendable reserves would cover 37.2 months of spending.

  • Debt

    20 of 20

    It owes 0% of what it owns.

  • Living within its means

    12 of 15

    Income exceeded spending by 2% of income.

  • Income trend

    5 of 15

    Income fell 23% on the year before.

  • Spending floor

    15 of 15

    87% of spending went to programs and raising each dollar of donations cost 0 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

Weak: 22 out of 100. Higher than 2% of charities in its peer group (medical research, $250k to $1m).

  • Independent board

    5 of 25

    0 of 10 voting board members are independent.

  • Conflict of interest policy

    0 of 15

    Reports no 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

    0 of 5

    Reports that it does not keep minutes of board meetings.

  • Board sees the tax return

    0 of 10

    Did not give the board a copy of this return before filing it.

  • Independent check of accounts

    6 of 15

    Its accounts were not audited or reviewed 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 (1)
  1. $835,833 spent. IN 2024, COMMUNITY CONTRIBUTIONS, LARGE GRANTS AND FUNDRAISER PROCEEDS WERE RECEIVED AND USED TO HELP FUND A CASTLEMAN'S DISEASE EDUCATIONAL CONFERENCE HELD IN DECEMBER 2024 IN SAN DIEGO, CALIFORNIA. THE CDCN (CASTLEMAN'S DISEASE COLLABORATIVE NETWORK) HELD THE 13TH ANNUAL "ACCELERATING RESEARCH & TREATMENT FOR CASTLEMAN'S DISEASE WORKING DINNER" WHERE A DIVERSE GROUP OF HEMATOLOGISTS, PATHOLOGISTS, PHYSICIAN-SCIENTISTS, TRANSLATIONAL RESEARCHERS AND PHARMACEUTICAL PARTNERS ATTENDED. THE MEETING FOCUSED ON THE GAPS THAT EXIST IN THE CURRENT STATE OF KNOWLEDGE REGARDING THE DISEASE, DIAGNOSTIC CRITERIA AND RECENTLY APPROVED TREATMENT OPTIONS. FUNDS WERE EXPENDED FOR FACILITY RENTAL, TRAVEL, LODGING MEALS AND OTHER RELATED EXPENSES.THE FUNDS WERE ALSO USED TO SUPPORT AN EDUCATIONAL SUMMIT MEETING HELD IN JULY 2024 IN PHILADELPHIA, PENNSYLVANIA FOR PATIENTS AND LOVED ONES DEALING WITH CASTLEMAN'S DISEASE. THE PURPOSE OF THIS MEETING WAS TO PROVIDE SUPPORTIVE RESOURCES, UP TO DATE INFORMATION ABOUT THE DISEASE, CURRENT RESEARCH AND TREATMENT OPTIONS AND WAYS TO SUPPORT THE EFFORTS IN THESE AREAS. FUNDS WERE EXPENDED FOR PROMOTION, PATIENT LITERATURE, LODGING, TRAVEL AND OTHER RELATED EXPENSES.TO SUPPORT THE ONGOING RESEARCH FOR CASTLEMAN'S DISEASE CAUSE AND TREATMENT:IN 2024, CASH CONTRIBUTIONS TOTALING $298,000 WERE MADE TO THE UNIVERSITY OF PENNSYLVANIA AND THE UPLIFTING ATHLETES ORGANIZATION. THESE CASH CONTRIBUTIONS WERE MADE TO FUND FURTHER RESEARCH IN CASTLEMAN'S DISEASE. IN 2024 CASH EXPENDITURES OF $537,833 WERE MADE TO COVER CONSULTING FEES, PHYSICIAN EDUCATION, PATIENT EDUCATION AND MAINTAIN A DATABASE FOR RESEARCH TEAMS INVOLVED IN VARIOUS AREAS OF CASTLEMAN'S DISEASE RESEARCH. THESE RESEARCH STUDIES OFFER PROMISE TO UNDERSTAND THE CASTLEMAN'S DISEASE MECHANISMS AND PROVIDE INSIGHTS FOR DEVELOPMENT OF PERSONALIZED THERAPIES.IN 2025, FURTHER COMMUNITY CONTRIBUTION SOLICITATIONS AND FUNDRAISING EVENTS ARE PLANNED SO THAT MORE MONEY IS AVAILABLE TO FURTHER FUND THE EDUCATION, RESEARCH, CAUSE AND CURE OF CASTLEMAN'S DISEASE.

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 August 2007.

    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.