2025-10-24T17:47:09-05:00 2024-12-31 410746749 CLIFTONLARSONALLEN LLP 2875 MICHELLE DRIVE 300 IRVINE CA 92606 990 2024-01-01 263331487 GLOBAL GENES GLOB 9492487273 1012 14TH STREET NW SUITE 500 WASHINGTON DC 20005 CHARLENE SON RIGBY CEO 9492487273 2025-10-24 1 1 LISA RYSSEL P00643670 7149781300 2025-10-24 2024 2025-03-06 01:10:19Z CHARLENE SON RIGBY 1012 14TH STREET NW SUITE 500 WASHINGTON DC 20005 7145531 0 X GLOBALGENES.ORG X 2008 CA GLOBAL GENES STRIVES TO CONNECT, EMPOWER AND INSPIRE THE RARE DISEASE COMMUNITY. 18 17 38 42 0 0 6410826 5686341 2055089 1449717 3487 9473 0 0 8469402 7145531 274880 175264 0 0 4277732 3960600 0 0 600190 4009247 3280029 8561859 7415893 -92457 -270362 2099140 1538482 1641403 1351107 457737 187375 GLOBAL GENES' MISSION IS TO DRIVE CHANGE THROUGH THE SUPPORT OF RARE DISEASE PATIENTS AND FAMILIES WHILE EQUIPPING ADVOCACY LEADERS WITH IMPORTANT TOOLS, RESOURCES, MENTORING, AND CONNECTIONS TO FURTHER ADVANCE AWARENESS, EDUCATION, AND RESEARCH. 0 0 5861349 175264 1449717 GLOBAL GENES' PROGRAMS PROVIDE NEXT-GENERATION PATIENT ADVOCATES WITH A CONTINUUM OF SERVICES TO ACCELERATE THEIR PATH FROM EARLY SUPPORT AND AWARENESS THROUGH RESEARCH READINESS, USING A COLLABORATIVE APPROACH THAT INVOLVES BIOPHARMA, RESEARCHERS AND FUNDERS, WITH DATA AS A CENTRAL CORE. WE AIM TO HAVE SIGNIFICANT IMPACT ON THE LIVES OF PEOPLE LIVING WITH RARE DISEASES BY BRINGING THE COMMUNITY TOGETHER THROUGH OUR PROGRAMS, WHICH ARE DESIGNED TO HELP PARTICIPANTS DEVELOP THE SKILLS THEY SEEK TO BUILD AND LEAD ORGANIZATIONS, BECOME RESEARCH READY, AND PURSUE THE DEVELOPMENT OF TREATMENTS. WE EQUIP ADVOCATES WITH THE KNOWLEDGE, SKILLS, AND CONNECTIONS THEY NEED TO ADVANCE THERAPIES AND AWARENESS FOR THEIR COMMUNITIES. 5861349 1 1 0 0 0 0 0 0 0 0 1 0 0 0 1 1 1 0 0 0 0 1 0 0 0 0 0 1 1 1 0 0 0 0 0 1 0 0 0 0 0 0 0 0 0 0 0 1 31 0 1 38 1 0 0 0 0 0 1 0 0 0 0 0 0 0 X 18 17 0 0 0 0 0 0 0 1 1 0 0 1 1 1 0 1 1 0 0 0 CA X X FOHRMAN & FOHRMAN 9494580836 24551 DEL PRADO 70 DANA POINT CA 92629 NICOLE R BOICE FOUNDER & CHIEF MISSION OFFICER 40.00 X X 254375 0 86 WALT KOWTONIUK CHAIR 1.00 X X 0 0 0 KATHERINE MAYNARD VICE CHAIR 1.00 X X 0 0 0 SIMON FROST CFO 1.00 X X 0 0 0 CHRISTINA HARTMAN SECRETARY 1.00 X X 0 0 0 BETSY BOGARD DIRECTOR 1.00 X 0 0 0 KHRYSTAL DAVIS DIRECTOR 1.00 X 0 0 0 ILANA FOGELMAN DIRECTOR 1.00 X 0 0 0 PETER GOODHAND DIRECTOR 1.00 X 0 0 0 HUGH HEMPEL DIRECTOR 1.00 X 0 0 0 RAM IYER DIRECTOR 1.00 X 0 0 0 NEIL KUMAR DIRECTOR 1.00 X 0 0 0 CAROLINE LOEWY DIRECTOR 1.00 X 0 0 0 INDU NAVAR DIRECTOR 1.00 X 0 0 0 DAVID PEARCE DIRECTOR 1.00 X 0 0 0 JOHN REYNDERS DIRECTOR 1.00 X 0 0 0 MORRIE RUFFIN DIRECTOR 1.00 X 0 0 0 ALVIN SHIH DIRECTOR 1.00 X 0 0 0 KELLY MCVEARRY DIRECTOR 1.00 X 0 0 0 CHARLENE SON RIGBY CEO 40.00 X 319125 0 836 VICTORIA WEISS SENIOR DIRECTOR, FINANCE 24.00 X 136800 0 86 KARMEN TRZUPEK SENIOR DIRECTOR, SCIENTIFIC PROGRAMS 40.00 X 179287 0 6386 ZOHREH TALEBIZADEH SENIOR DIRECTOR, RARE-X RESEARCH PROGRAM 40.00 X 180000 0 86 LAUREN ALFORD SENIOR DIRECTOR, MARKETING 40.00 X 168506 0 86 TIMOTHY EHRHARD SENIOR DIRECTOR, IT (TERM 12/24) 40.00 X 151746 0 86 CHWENWOAN KUAN DIRECTOR, PROGRAM OPERATIONS 40.00 X 146285 0 6062 1536124 0 13714 16 0 1 0 ADJUVANT PARTNERS LLC 1340 SMITH AVENUE SUITE 200 BALTIMORE MD 21209 CONSULTING SERVICES 180000 MSG CONSULTING GROUP LLC 838 DARLINGTON AVENUE MAHWAH NJ 07430 CONSULTING SERVICES 161606 T3 DYNAMICS LLC 5739 KANAN ROAD SUITE 288 AGOURA HILLS CA 91301 CONSULTING SERVICES 142500 LEVINE MEDIA GROUP 21 KINGSTON ROAD KENSINGTON CA 94707 EDITORIAL SERVICES 112500 4 5686341 5686341 MEMBERSHIP FEES 900099 1422000 1422000 CONFERENCE SPONSORSHIP 900099 27717 27717 1449717 9473 9473 7145531 1449717 0 9473 X 70750 70750 95514 95514 9000 9000 711308 583324 31995 95989 2848775 2209500 281085 358190 113150 67821 11333 33996 287367 223803 25372 38192 7417 5549 1868 61310 61310 1148545 833088 298207 17250 38962 34115 4713 134 7912 3589 4287 36 428498 320181 95951 12366 78909 27970 50939 137940 126129 4729 7082 999104 986427 2 12675 27363 16777 7781 2805 PROGRAM AWARENESS 146060 143819 238 2003 FEES AND TAXES 107811 89679 465 17667 BANK CHARGES 72557 8525 63004 1028 OTHER COSTS 6100 4675 661 764 11541 1114 10414 13 7415893 5861349 954354 600190 1157502 554935 251643 2003 466406 853682 194808 126862 204337 204337 0 0 28781 1000 2099140 1538482 804996 718207 645000 437000 191407 195900 1641403 1351107 X 457737 -1318314 1505689 457737 187375 2099140 1538482 -270362 0 X X 0 1 X 1 0 X 3581873 4169975 3865176 6410826 5686341 23714191 3581873 4169975 3865176 6410826 5686341 23714191 4955466 18758725 11307 940 1597 3487 9473 26804 142 142 23741137 5195326 0.79010 0.80700 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 204337 204337 0 0 DEFERRED COMPENSATION 195900 195900 X 7145531 0 7145531 0 7145531 7415893 0 7415893 0 7415893 PART X, LINE 2: THE ORGANIZATION IS EXEMPT FROM FEDERAL INCOME TAXES UNDER SECTION 501(C)(3) OF THE INTERNAL REVENUE CODE (IRC) AND CORRESPONDING STATE CODE AS A CHARITABLE ORGANIZATION WHEREBY ONLY UNRELATED BUSINESS INCOME, AS IDENTIFIED BY SECTION 509(A)(1) OF THE IRC, IS SUBJECT TO INCOME TAX. THE ORGANIZATION HAD NO UNRELATED BUSINESS INCOME DURING THE YEAR ENDED DECEMBER 31, 2024. ACCORDINGLY, NO PROVISION FOR INCOME TAXES HAS BEEN RECORDED IN THE ACCOMPANYING FINANCIAL STATEMENTS. THE ORGANIZATION ADHERES TO THE PROVISIONS OF FASB ASC 740-10-25, ACCOUNTING FOR UNCERTAINTY IN INCOME TAXES. IN ACCORDANCE WITH FASB ASC 740-10-25, AN ORGANIZATION MUST RECOGNIZE THE TAX BENEFIT ASSOCIATED WITH TAX TAKEN FOR TAX RETURN PURPOSES WHEN IT IS MORE LIKELY THAN NOT THAT THE POSITION WILL BE SUSTAINED. THE ORGANIZATION DOES NOT BELIEVE THAT THERE ARE ANY MATERIAL UNCERTAIN TAX POSITIONS, AND ACCORDINGLY, IT HAS NOT RECOGNIZED ANY LIABILITY FOR UNRECOGNIZED TAX BENEFITS OR ANY RELATED INTEREST OR PENALTIES. YEARS PRIOR TO 2021 ARE NO LONGER SUBJECT TO U.S. FEDERAL INCOME TAX EXAMINATION, AND THE ORGANIZATION IS NO LONGER SUBJECT TO STATE INCOME TAX EXAMINATIONS FOR YEARS BEFORE 2020. 0 0 0 0 0 0 0 0 0 EAST ASIA AND THE PACIFIC MENTAL HEALTH IMPACT GRANT 9000 CASH 0 N/A N/A 1 0 0 0 0 0 0 0 1 LHON COLLECTIVE 2505 PRESIDIO DR SAN DIEGO CA 92103 882257719 501(C)(3) 9000 0 N/A N/A MENTAL HEALTH IMPACT GRANT CURE JM FOUNDATION 19309 WINMEADE DRIVE SUITE 204 LEESBURG VA 20176 352222262 501(C)(3) 6750 0 N/A N/A MENTAL HEALTH IMPACT GRANT NATIONAL FOUNDATION FOR ECTODERMAL DYSPLASIAS 6 EXECUTIVE DRIVE SUITE 2 FAIRVIEW HEIGHTS IL 62208 371112496 501(C)(3) 9000 0 N/A N/A MENTAL HEALTH IMPACT GRANT OXALOSIS & HYPEROXALURIA FOUNDATION 579 ALBANY POST ROAD NEW PALTZ NY 12561 911457505 501(C)(3) 9000 0 N/A N/A MENTAL HEALTH IMPACT GRANT PEDIATRIC BRAIN TUMOR FOUNDATION 380 KNOLLWOOD ST STE H 125 WINSTON SALEM NC 27103 581966822 501(C)(3) 9000 0 N/A N/A MENTAL HEALTH IMPACT GRANT THE ALLO HOPE FOUNDATION 720 HERITAGE DRIVE TUSCALOOSA AL 35406 842785519 501(C)(3) 9000 0 N/A N/A MENTAL HEALTH IMPACT GRANT THE SUMAIRA FOUNDATION 485 FOLEY ST SOMERVILLE MA 02145 472398246 501(C)(3) 9000 0 N/A N/A MENTAL HEALTH IMPACT GRANT 7 0 SCHOLARSHIP 3 12960 N/A RCP SCHOLARSHIP FUNDED TRAVEL FOR PATIENTS 66 82554 N/A TRAVEL REIMBURSEMENT PART I, LINE 2: THE GRANTEE AGREES TO SUBMIT A FINAL EVALUATION REPORT FOR GG REVIEW ON OR BEFORE THE CONTRACTED DUE DATE. FAILURE TO SUBMIT FINAL REPORTING AND PARTICIPANT SURVEY DATA (IF APPLICABLE) BY THIS DATE WILL REQUIRE ANY AND ALL FUNDS AWARDED TO THE GRANTEE TO BE RETURNED TO GG. X X X X X 0 0 0 0 0 0 0 0 0 CHARLENE SON RIGBY CEO 319125 0 0 0 0 0 0 0 836 0 319961 0 0 0 NICOLE R BOICE FOUNDER & CHIEF MISSION OFFICER 254375 0 0 0 0 0 0 0 86 0 254461 0 0 0 KARMEN TRZUPEK SENIOR DIRECTOR, SCIENTIFIC PROGRAMS 179287 0 0 0 0 0 0 0 6386 0 185673 0 0 0 ZOHREH TALEBIZADEH SENIOR DIRECTOR, RARE-X RESEARCH PRO 180000 0 0 0 0 0 0 0 86 0 180086 0 0 0 LAUREN ALFORD SENIOR DIRECTOR, MARKETING 168506 0 0 0 0 0 0 0 86 0 168592 0 0 0 CHWENWOAN KUAN DIRECTOR, PROGRAM OPERATIONS 146285 0 0 0 0 0 0 0 6062 0 152347 0 0 0 TIMOTHY EHRHARD SENIOR DIRECTOR, IT (TERM 12/24) 151746 0 0 0 0 0 0 0 86 0 151832 0 0 0 MORRIE RUFFIN BOARD MEMBER 180000 CONSULTING FEES TO ADJUVANT PARTNERS, LLC FOR FINANCE AND OPERATION SERVICES 0 FORM 990, PART VI, SECTION A, LINE 1A THE FINANCE & AUDIT COMMITTEE HAS AUTHORITY TO CHOOSE AUDITOR AND REVIEW AND APPROVE AUDITED FINANCIALS. FORM 990, PART VI, SECTION B, LINE 11B DRAFT FORM 990 IS SENT TO THE MEMBERS OF THE BOARD FOR THEIR REVIEW BEFORE FILING. FORM 990, PART VI, SECTION B, LINE 12 BOARD OF DIRECTORS MEMBERS ARE REQUIRED TO DISCLOSE ANY CONFLICT OF INTEREST ANNUALLY. FORM 990, PART VI, SECTION B, LINE 15 THE COMPENSATION COMMITTEE MET IN Q2 2024 AND REVIEWED MARKET RESEARCH ON NON-PROFIT EXECUTIVE SALARIES AND APPROVED INCREASES AND AN EXECUTIVE BONUS STRUCTURE. OFFICERS DO NOT RECEIVE SALARIES AND THEREFORE THERE IS NO NEED TO VOTE TO APPROVE. THE PROCESS DESCRIBED HERE WAS LAST COMPLETED IN 2024. FORM 990, PART VI, SECTION C, LINE 19 GLOBAL GENES' FINANCIAL STATEMENTS, CONFLICT OF INTEREST POLICY, AND GOVERNING DOCUMENTS ARE AVAILABLE UPON REQUEST. FORM 990, PART IX, LINE 11G RARE-X DATA COLLECTION PROGRAM: PROGRAM SERVICE EXPENSES 98,820. MANAGEMENT AND GENERAL EXPENSES 0. FUNDRAISING EXPENSES 0. TOTAL EXPENSES 98,820. OUTSIDE SERVICES: PROGRAM SERVICE EXPENSES 734,268. MANAGEMENT AND GENERAL EXPENSES 298,207. FUNDRAISING EXPENSES 17,250. TOTAL EXPENSES 1,049,725. FORM 990, PART XII, LINE 2C: THE PROCESS FOR OVERSIGHT AND SELECTION OF AN INDEPENDENT ACCOUNTANT HAS NOT CHANGED FROM THE PRIOR YEAR.