Castleman Disease Collaborative Network

What it reported doing in 2024

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.

Financial Efficiency

• Mission deployment rate: 87.3%; rating input score 87
• Program expense ratio: 87%; rating input score 87
• 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: 100%; rating input score 100; 76th percentile among comparable filings
• Major donor itemization: Yes; rating input score 100
• Related-party transparency: Limited

Accountability

• Independent voting board: 0%; rating input score 0; 5th percentile among comparable filings
• Governance controls: 0 of 7 controls in place; rating input score 0
  • Conflict-of-interest policy: Fail
  • Whistleblower policy: Fail
  • Document-retention policy: Fail
  • CEO compensation review process: NotApplicable
  • Other executive compensation review process: NotApplicable
  • Form 990 shared with the board: Fail
  • Board meeting minutes documented: Fail
  • Audit committee oversight: Missing
  • Independent financial-statement audit: Fail

Sustainability

• Operating margin: 1.8%; rating input score 41; 41st percentile among comparable filings
• Total-asset coverage ratio: 3.1; rating input score 76; 76th percentile among comparable filings
• Liabilities to assets ratio: 0; rating input score 91; 91st percentile among comparable filings
• Officer compensation ratio: 0%; rating input score 81; 81st percentile among comparable filings

Growth

• Program expense growth: 14.9% per year; rating input score 100; 75th percentile among comparable filings
• Revenue growth: 13.3% per year; rating input score 100; 75th percentile among comparable filings
• Asset growth: 20.4% per year; rating input score 100; 82nd percentile among comparable filings