2026-06-26T11:30:32-04:00 2025-12-31 561743537 LANGDON & COMPANY LLP 223 US HIGHWAY 70 EAST SUITE 100 GARNER NC 275294051 990 2025-01-01 463405526 RARE CANCER RESEARCH FOUNDATION RARE 8444347272 703 FOSTER STREET DURHAM NC 27701 MARSHALL THOMPSON CTO 9198278373 2026-06-26 true SUSAN DEAN P01281194 9196621001 2026-06-26 2025 2025-03-06 01:10:19Z MARSHALL THOMPSON 703 FOSTER ST DURHAM NC 27701 446172 false X WWW.RCRF.ORG X 2013 NC THE RARE CANCER RESEARCH FOUNDATION IS DEDICATED TO CURING RARE CANCERS THROUGH STRATEGIC INVESTMENTS AND COLLABORATIONS THAT CATALYZE EFFECTIVE RESEARCH AND ACCELERATE DEPLOYMENT OF PROMISING THERAPIES. 6 5 9 0 1184545 175430 541563 230925 47265 39817 0 1773373 446172 81890 5550 0 1204406 1143340 0 134101 954175 593367 2240471 1742257 -467098 -1296085 3059554 1358604 743703 338838 2315851 1019766 X THE RARE CANCER RESEARCH FOUNDATION IS DEDICATED TO CURING RARE CANCERS THROUGH STRATEGIC INVESTMENTS AND COLLABORATIONS THAT CATALYZE EFFECTIVE RESEARCH AND ACCELERATE DEPLOYMENT OF PROMISING THERAPIES. false false 347544 5550 116779 PRISM (H37) - A PROGRAM TO CREATE EXCEPTIONAL OUTCOMES FOR INDIVIDUALS FACING ADVANCED CANCERS BY PUSHING THE BOUNDARIES OF SCIENCE, RESEARCH, AND CLINICAL INNOVATIONS. THE FOUNDATION WORKS IN DEEP PARTNERSHIPS WITH A SMALL GROUP OF CLIENTS, EXPLORING THE DETAILED MOLECULAR AND CLINICAL CHARACTERISTICS OF THE INDIVIDUAL CLIENTS DISEASE TO HELP THEM AND THEIR CLINICAL TEAM TO MAKE MORE DATA INFORMED DECISIONS ABOUT THEIR TREATMENT JOURNEY AND CONTRIBUTE THAT DETAILED RESEARCH INFORMATION TO THE DATA PLATFORM FOR FUTURE STUDY. 344230 114146 PATTERN.ORG A GROUNDBREAKING ONLINE PLATFORM THAT EMPOWERS CANCER PATIENTS TO CONSENT AND DONATE LIVING TISSUE AND CLINICAL DATA TO RESEARCH REGARDLESS OF THEIR TREATMENT LOCATION IN THE UNITED STATES. ONCE A PATIENT ENROLLS, THE PATTERN.ORG TEAM COORDINATES THE COLLECTION AND SHIPMENT OF THE TISSUE AND DATA TO WORLD CLASS RESEARCH STUDIES WHICH IN TURN BROADLY SHARE ANY RESULTING MODELS AND LEARNING. 404190 DATA PLATFORM A PROGRAM INITIATED IN 2023 TO DEVELOP A UNIFIED PLATFORM TO HOST COMBINED MOLECULAR AND CLINICAL RARE CANCER DATA OBTAINED INTERNALLY AND EXTERNALLY, WHICH WILL BE SHARED BROADLY WITH THE CANCER RESEARCH COMMUNITY. 255234 BIOBANK A PROGRAM THAT MAINTAINS A HIGH-QUALITY REPOSITORY OF CANCER BIOSPECIMENS (TISSUE AND BLOOD), COLLECTED USING STANDARDIZED BEST PRACTICES AND LINKED TO CLINICAL AND MOLECULAR DATA. THE PATTERN BIOBANK SUPPORTS BOTH PATIENTS AND RESEARCH PARTNERS BY PROVIDING CUSTODIAL SERVICES, MANAGING END-TO-END LOGISTICS, AND ACCEPTING DONATED RARE CANCER SAMPLES, PRESERVING AND DISTRIBUTING WELL-CHARACTERIZED SPECIMENS TO ADVANCE RESEARCH AND ACCELERATE DISCOVERY. 255234 1351198 true true false false false false false false false false false false false true false true false false false false false false false false false false false true false true false false false false false false true false false false false false false false false false false true 20 0 true 9 true false false false false false false false false false false false false X 6 5 true false false false false false false true true false false true true true true true true false false false X X BARBARA VAN HARE 8444347272 703 FOSTER STREET DURHAM NC 27701 MARSHALL THOMPSON CTO 40.00 X 176310 0 5400 ROBIN KAGEYAMA DIR DATA PLA 40.00 X 170143 0 5388 AMBER SMITH DIR BIOBANKI 40.00 X 150001 0 12 BENJAMIN KAMPHAUS DATA ENGINEE 40.00 X 133595 0 5400 HANA LITTLEFORD CLINICAL DAT 40.00 X 120192 0 5400 BARBARA VAN HARE PRES. OF PAT 40.00 X X 117742 0 300 CHRISTINE SPENCER HEAD OF PRIS 40.00 X 104545 0 8 VIRGINIA SPITZER CEO 40.00 X 17500 0 1 RISHI BAGRODIA DIRECTOR 1.00 X 0 0 0 KEITH LAABS DIRECTOR 1.00 X 0 0 0 CHRIS HEERY MD CHAIRMAN 5.00 X 0 0 0 RYAN PRIPSTEIN DIRECTOR 1.00 X 0 0 0 JANE WILKINSON DIRECTOR 1.00 X 0 0 0 990028 21909 7 false true false 175430 1667 175430 PARTICIPANT SERVICE FEE 116779 116779 PROGRAM SERVICE REVENUE 114146 114146 230925 39817 39817 446172 230925 39817 X 5550 5550 642795 566161 45656 30978 363737 320372 25835 17530 45309 39907 3218 2184 91499 80591 6499 4409 41460 41460 406443 232816 94627 79000 6173 1695 4478 14355 8158 6197 52279 41538 10741 40374 25887 14487 2368 2368 2636 2636 RESEARCH SUPPLIES 24488 24488 IN-KIND EXPENSE 1667 1667 MISC 1124 1124 1742257 1351198 256958 134101 2553244 673290 47140 27636 52628 27506 16967 406542 613205 3059554 1358604 718703 304207 25000 34631 743703 338838 X 1965845 605406 350006 414360 2315851 1019766 3059554 1358604 -1296085 X false true X true false X 1050279 37638 2606409 1184545 175430 5054301 1050279 37638 2606409 1184545 175430 5054301 1977278 3077023 47265 39817 87082 5141383 1692613 0.59850 0.58770 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED SOFTWARE IN PROGRESS - DATA COMMONS 566605 SOFTWARE, NET OF AMORTIZATION 45000 OTHER CURRENT ASSETS 1600 613205 X 446172 446172 446172 1742257 1742257 1742257 SCHEDULE D, PAGE 3, PART X THE FOUNDATION EVALUATES ANY UNCERTAIN TAX POSITIONS. ACCORDINGLY, THE FOUNDATIONS POLICY IS TO RECORD A LIABILITY FOR ANY TAX POSITION TAKEN THAT IS BENEFICIAL TO THE FOUNDATION, INCLUDING ANY RELATED INTEREST AND PENALTIES, WHEN IT IS MORE LIKELY THAN NOT THE POSITION OF MANAGEMENT WITH RESPECT TO A TRANSACTION OR CLASS OF TRANSACTIONS WILL BE OVERTURNED BY A TAXING AUTHORITY UPON EXAMINATION. MANAGEMENT DOES NOT BELIEVE ANY SIGNIFICANT INCOME TAX UNCERTAINTIES EXIST AS OF DECEMBER 31, 2025 AND 2024. true THE UNIVERSITY OF TEXAS MD ANDERSON 1515 HOLCOMBE BLVD HOUSTON TX 77030 746001118 170(A) 5550 RESEARCH 1 SCHEDULE I, PAGE 1, PART I, LINE 2 THE ORGANIZATION OBTAINS REPORTS FROM EACH GRANTEE PERIODICALLY PERTAINING TO THE PROGRESS AND STATUS OF RESEARCH AND USE OF GRANT FUNDS. IN ADDITION, ANY PUBLISHED FINDINGS RELATED TO THE RESEARCH IS ALSO REQUESTED BY THE ORGANIZATION FOR REVIEW. false false false false false false false false false MARSHALL THOMPSON CTO 176310 5400 181710 ROBIN KAGEYAMA DIR DATA PLATFORM 170143 5388 175531 AMBER SMITH DIR BIOBANKING 150001 12 150013 BARBARA VAN HARE FAMILY MEMBER 117742 COMPENSATION false SCHEDULE L, PART V BARBARA VAN HARE, THE AUNT OF BOARD MEMBER KEITH LAABS, IS EMPLOYED BY RCRF AS THE DIRECTOR OF PARTNERSHIPS. FORM 990, PAGE 2, PART III, LINE 4D BIOBANK A PROGRAM THAT MAINTAINS A HIGH-QUALITY REPOSITORY OF CANCER BIOSPECIMENS (TISSUE AND BLOOD), COLLECTED USING STANDARDIZED BEST PRACTICES AND LINKED TO CLINICAL AND MOLECULAR DATA. THE PATTERN BIOBANK SUPPORTS BOTH PATIENTS AND RESEARCH PARTNERS BY PROVIDING CUSTODIAL SERVICES, MANAGING END-TO-END LOGISTICS, AND ACCEPTING DONATED RARE CANCER SAMPLES, PRESERVING AND DISTRIBUTING WELL-CHARACTERIZED SPECIMENS TO ADVANCE RESEARCH AND ACCELERATE DISCOVERY. FORM 990, PAGE 6, PART VI, LINE 2 BARBARA VAN HARE MARK LAABS DIRECTOR OFFICER AUNT FORM 990, PAGE 6, PART VI, LINE 11B THE FORM 990 "REVIEW PROCESS" WILL INVOLVE E-MAIL CIRCULATION AND INSPECTION BY EACH OF THE BOARD MEMBERS FOLLOWED BY DOCUMENTED APPROVAL. FORM 990, PAGE 6, PART VI, LINE 12C TO ENSURE THE CORPORATION OPERATES IN A MANNER CONSISTENT WITH CHARITABLE PURPOSES AND DOES NOT ENGAGE IN ACTIVITIES THAT COULD JEOPARDIZE ITS TAX- EXEMPT STATUS, PERIODIC REVIEW SHALL BE CONDUCTED. THE PERIODIC REVIEWS SHALL, AT A MINIMUM, INCLUDE WHETHER COMPENSATION ARRANGEMENTS AND BENEFITS ARE REASONABLE, BASED ON COMPETENT SURVEY INFORMATION, AND THE RESULT OF ARM'S LENGTH BARGAINING, AND WHETHER PARTNERSHIPS, JOINT VENTURES, AND ARRANGEMENTS WITH MANAGEMENT ORGANIZATIONS CONFORM TO THE CORPORATION'S WRITTEN POLICIES, ARE PROPERLY RECORDED, REFLECT REASONABLE INVESTMENT OR PAYMENTS FOR GOODS AND SERVICES, FURTHER CHARITABLE PURPOSES AND DO NOT RESULT IN INUREMENT, IMPERMISSIBLE PRIVATE BENEFIT OR IN AN EXCESS BENEFIT TRANSACTION. FORM 990, PAGE 6, PART VI, LINE 19 ALL DOCUMENTS ARE CURRENTLY AVAILABLE TO THE PUBLIC UPON REQUEST. PROSPECTIVELY, ALL INFORMATION WILL ALSO BE AVAILABLE ON WWW.GUIDESTAR.COM. FORM 990, PART IX, LINE 11G CONTRACTED SERVICES 184,508 82,791 79,000 PROFESSIONAL RESEARCH SERVICE 41,559 0 0 PROFESSIONAL SERVICES 6,749 11,836 0 TOTAL 232,816 94,627 79,000