2024-09-25T13:24:02-05:00 2023-12-31 410746749 CLIFTONLARSONALLEN LLP 2875 MICHELLE DRIVE 300 IRVINE CA 92606 990 2023-01-01 263331487 GLOBAL GENES GLOB 9492487273 1012 14TH STREET NW SUITE 500 WASHINGTON DC 20005 CHARLENE SON RIGBY CEO 9492487273 2024-09-23 1 1 LISA RYSSEL P00643670 7149781300 2024-09-23 2023 2024-08-08 14:25:15Z X CHARLENE SON RIGBY 1012 14TH STREET NW SUITE 500 WASHINGTON DC 20005 8469402 0 X GLOBALGENES.ORG X 2008 CA GLOBAL GENES STRIVES TO CONNECT, EMPOWER AND INSPIRE THE RARE DISEASE COMMUNITY. 18 16 41 17 0 0 3865176 6410826 1690520 2055089 1739 3487 0 0 5557435 8469402 469253 274880 0 0 2572193 4277732 0 0 441938 4658743 4009247 7700189 8561859 -2142754 -92457 2294462 2099140 1753204 1641403 541258 457737 X 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. 1 0 6822737 274880 2055089 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 A SIGNIFICANT IMPACT ON THE LIVES OF PEOPLE LIVING WITH RARE DISEASES BY BRINGING THE COMMUNITY TOGETHER AROUND OUR THREE PILLARS OF SUPPORT, EDUCATION, AND RESEARCH, WHILE WEAVING HEALTH EQUITY THROUGH ALL OF OUR INITIATIVES TO FOSTER A CULTURE OF INCLUSION. OUR PROGRAMS ARE DESIGNED TO HELP OUR PARTICIPANTS DEVELOP THE SKILLS THEY SEEK TO BUILD ORGANIZATIONS, BECOME RESEARCH READY, AND PURSUE THE DEVELOPMENT OF TREATMENTS. 6822737 1 1 0 0 0 0 0 0 0 0 1 0 0 0 1 1 1 0 0 0 1 1 0 0 0 0 0 1 0 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1 34 0 1 41 1 0 0 0 0 0 0 0 0 0 0 0 0 X 18 16 1 0 1 0 0 0 0 1 1 0 0 1 1 1 1 1 1 1 1 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 257792 0 72 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 SIMON FROST CFO 1.00 X X 0 0 0 PETER GOODHAND DIRECTOR 1.00 X 0 0 0 CHRISTINA HARTMAN SECRETARY 1.00 X X 0 0 0 HUGH HEMPEL DIRECTOR 1.00 X 0 0 0 RAM IYER DIRECTOR 1.00 X 0 0 0 WALT KOWTONIUK CHAIR 1.00 X X 0 0 0 NEIL KUMAR DIRECTOR 1.00 X 0 0 0 CAROLINE LOEWY DIRECTOR 1.00 X 0 0 0 KATHERINE MAYNARD VICE CHAIR 1.00 X 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 CHARLENE RIGBY CEO 40.00 X 322542 0 75 VICTORIA WEISS SENIOR DIRECTOR, FINANCE 24.00 X 124450 0 0 TIMOTHY R EHRHARD SENIOR DIRECTOR, IT 40.00 X 170000 0 78 LAUREN ALFORD SENIOR DIRECTOR, MARKETING COMMUNICATION 40.00 X 165000 0 78 KARMEN TRZUPEK SENIOR DIRECTOR, SCIENTIFIC PROGRAMS 40.00 X 162097 0 6378 VANESSA VOGEL-FARLEY SENIOR DIRECTOR, RESEARCH DATA ANALYTICS & GOVERNA 40.00 X 160000 0 72 MARIA DELLA ROCCA SENIOR DIRECTOR, SUPPORT & EDUCATION 40.00 X 160779 0 72 1522660 0 6825 15 1 1 0 ASSURED SPC 4211 SW CHESAPEAK AVE PORTLAND OR 97239 CONSULTING SERVICES 197420 ADJUVANT PARTNERS LLC 1340 SMITH AVENUE SUITE 200 BALTIMORE MD 21209 CONSULTING SERVICES 180000 LEVINE MEDIA GROUP 21 KINGSTON ROAD KENSINGTON CA 94707 EDITORIAL SERVICES 158000 MSG CONSULTING GROUP LLC 838 DARLINGTON AVENUE MAHWAH NJ 07430 CONSULTING SERVICES 155588 4 6410826 6410826 MEMBERSHIP FEES 900099 2017302 2017302 CONFERENCE SPONSORSHIP 900099 37787 37787 2055089 3487 3487 8469402 2055089 0 3487 274880 274880 704930 422958 70493 211479 3167908 2621058 429934 116916 86928 67897 11491 7540 317966 241992 40949 35025 71815 60125 11690 99867 2679 97188 18000 14033 3967 682559 561715 109321 11523 49198 36899 12299 154014 142298 6132 5584 932847 932847 2525 2525 23266 13847 7415 2004 OUTSIDE SERVICES 1292159 867207 392155 32797 PROGRAM AWARENESS 223494 220109 2698 687 FEES AND TAXES 143785 133539 265 9981 BANK CHARGES 99865 49550 48952 1363 215853 159104 49710 7039 8561859 6822737 1297184 441938 945899 1157502 425887 251643 372750 160977 466406 332882 194808 207535 207535 2525 0 53542 28781 2294462 2099140 1228794 804996 473927 645000 50483 191407 1753204 1641403 X 541258 457737 541258 457737 2294462 2099140 -92457 8936 0 X X 0 1 X 1 0 X 5297898 3581873 4169975 3865176 6410826 23325748 5297898 3581873 4169975 3865176 6410826 23325748 4469052 18856696 23101 11307 940 1597 3487 40432 142 142 23366322 3745609 0.80700 0.82660 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 204339 204339 0 3196 3196 0 0 LONG TERM OPERATING LEASE LIABILITIES 25707 DEFERRED COMPENSATION 165700 191407 X 8478338 8936 8936 8469402 0 8469402 8561859 0 8561859 0 8561859 PART X, LINE 2: THE ORGANIZATION IS EXEMPT FROM FEDERAL INCOME TAXES UNDER SECTION 501(C)(3) OF THE INTERNAL REVENUE CODE (THE CODE) AND CORRESPONDING STATE CODE AS A CHARITABLE ORGANIZATION WHEREBY ONLY UNRELATED BUSINESS INCOME, AS IDENTIFIED BY SECTION 509(A)(1) OF THE CODE, IS SUBJECT TO INCOME TAX. THE ORGANIZATION HAD NO UNRELATED BUSINESS INCOME DURING THE YEAR ENDED DECEMBER 31, 2022. 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 2019 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 2018. 1 EUROPE (INCLUDING ICELAND & GREENLAND) GRANTS TO RECIPIENTS 11230 SUB-SAHARAN AFRICA GRANTS TO RECIPIENTS 19000 EAST ASIA AND THE PACIFIC GRANTS TO RECIPIENTS 1500 NORTH AMERICA GRANTS TO RECIPIENTS 15600 SOUTH ASIA GRANTS TO RECIPIENTS 2500 0 0 0 0 0 0 49830 0 49830 EUROPE (INCLUDING ICELAND & GREENLAND) MEET-UPS GRANT 5670 0 NORTH AMERICA HEALTH EQUITY GRANT 8600 0 SUB-SAHARAN AFRICA HEALTH EQUITY GRANT 8600 0 SUB-SAHARAN AFRICA HEALTH EQUITY GRANT 8600 0 0 0 0 0 0 0 PART I, LINE 2: THE GRANTEE AGREES TO SUBMIT A FINAL EVALUATION REPORT TO THE ORGANIZATION FOR REVIEW ON OR BEFORE THE 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 THE ORGANIZATION. 1 YELLOW BRICK ROAD PROJECT 767 5TH AVE FL 17 NEW YORK CITY NY 10153 834191901 501(C)(3) 5100 0 MEET-UPS GRANT USHER SYNDROME COALITION 9 CORNERSTONE SQUARE SUITE 400-224 WESTFORD ME 01886 264560897 501(C)(3) 15000 0 MENTAL HEALTH GRANT THE RUNX1 RESEARCH PROGRAM 1482 E VALLEY RD SANTA BARBARA CA 93108 813557785 501(C)(3) 8600 0 HEALTH EQUITY GRANT THE MARFAN FOUNDATION 22 MANHASSET AVE PORT WASHINGTON NY 11050 521265361 501(C)(3) 15000 0 FAIR GRANT THE CUTE SYNDROME FOUNDATION 1 MEADOWBROOK LANE TROY NY 12180 462699066 501(C)(3) 14973 0 MENTAL HEALTH GRANT TEAM TELOMERE PO BOX 1909 COEUR D ALENE ID 83816 263776187 501(C)(3) 8600 0 HEALTH EQUITY GRANT PHELAN-MCDERMID SYNDROME FOUNDATION 8 SORRENTO DRIVE OSPREY FL 34229 043673104 501(C)(3) 15000 0 MENTAL HEALTH GRANT OUR ODYSSEY 299 MARKET STREET SUITE 250 SADDLE BROOK NJ 07663 841853376 501(C)(3) 15000 0 MENTAL HEALTH GRANT NR2F1 FOUNDATION 416 E KENILWORTH AVE ROYAL OAK MI 48067 832659721 501(C)(3) 8600 0 HEALTH EQUITY GRANT NEC SOCIETY 140 B ST SUITE 5 128 DAVIS CA 95616 464426455 501(C)(3) 5100 0 MEET-UPS GRANT NATIONAL ATAXIA FOUNDATION 600 HIGHWAY 169 SOUTH SUITE 1725 MINNEAPOLIS MN 55426 410832903 501(C)(3) 5100 0 MEET-UPS GRANT LYMPHANGIOMATOSIS & GORHAM'S DISEASE ALLIANCE 19919 VILLA LANETE PLACE BOCA RATON FL 33434 261224181 501(C)(3) 15000 0 MENTAL HEALTH GRANT IMMUNE DEFICIENCY FOUNDATION 7550 TEAGUE ROAD SUITE 220 HANOVER MD 21076 521214782 501(C)(3) 8600 0 HEALTH EQUITY GRANT HEREDITARY NEUROPATHY FOUNDATION 401 PARK AVE S 10 NEW YORK NY 10016 134137654 501(C)(3) 8600 0 FAIR GRANT ECD GLOBAL ALLIANCE PO BOX 775 DERIDDER LA 70634 270759192 501(C)(3) 15000 0 MENTAL HEALTH GRANT DREAMSICKLE KIDS FOUNDATIONINC 6895 E LAKE MEAD BLVD SUITE 6 204 VEGAS NV 89156 824557748 501(C)(3) 15000 0 MENTAL HEALTH GRANT COFFIN-SIRIS SYNDROME FOUNDATION 11611 106 AVE NE KIRKLAND WA 98034 822116961 501(C)(3) 5100 0 FAIR GRANT CHARCOT-MARIE-TOOTH ASSOCIATION BOX 105 GLENOLDEN PW 19036 222480896 501(C)(3) 5100 0 MEET-UPS GRANT BEAUTIFUL YOU MRKH FOUNDATION INC 13301 CLIFTON RD SILVER SPRING MD 20904 454791469 501(C)(3) 15000 0 MENTAL HEALTH GRANT ANGELMAN SYNDROME FOUNDATION 3015 E NEW YORK ST STE A2-285 AURORA IL 60504 593092842 501(C)(3) 15000 0 MENTAL HEALTH GRANT NEW ENGLAND HEMOPHILIA ASSOCIATION 347 WASHINGTON ST STE 401 DEDHAM MA 02026 046111861 501(C)(3) 14179 0 MENTAL HEALTH GRANT ALLIANCE TO CURE CAVERNOUS MALFORMATION 977 SEMINOLE TRAIL BOX 367 CHARLOTTESVILLE VA 22901 020600697 501(C)(3) 8600 0 HEALTH EQUITY GRANT 22 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 GG. X X X X X 0 0 0 0 0 0 0 0 0 CHARLENE RIGBY CEO 322542 0 0 0 0 0 0 0 75 0 322617 0 0 0 NICOLE R BOICE FOUNDER & CHIEF MISSION OFFICER 257792 0 0 0 0 0 0 0 72 0 257864 0 0 0 TIMOTHY R EHRHARD SENIOR DIRECTOR, IT 170000 0 0 0 0 0 0 0 78 0 170078 0 0 0 KARMEN TRZUPEK SENIOR DIRECTOR, SCIENTIFIC PROGRAMS 162097 0 0 0 0 0 0 0 6378 0 168475 0 0 0 LAUREN ALFORD SENIOR DIRECTOR, MARKETING COMMUNICA 165000 0 0 0 0 0 0 0 78 0 165078 0 0 0 MARIA DELLA ROCCA SENIOR DIRECTOR, SUPPORT & EDUCATION 160779 0 0 0 0 0 0 0 72 0 160851 0 0 0 VANESSA VOGEL-FARLEY SENIOR DIRECTOR, RESEARCH DATA ANALY 160000 0 0 0 0 0 0 0 72 0 160072 0 0 0 PART I, LINE 3 THE COMPENSATION COMMITTEE MET IN Q2 24 AND REVIEWED MARKET RESEARCH ON NON-PROFIT EXECUTIVE SALARIES AND PROPOSED INCREASES AND A BONUS STRUCTURE THAT WERE BOARD APPROVED. SUPPORTING NEXT-GENERATION ADVOCACY SUPPORTING NEXT-GENERATION ADVOCACY OUR MISSION IS TO PROVIDE 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. FORM 990, PART III, LINE 2 AS A RESULT OF THE MERGER WITH RARE-X ON DECEMBER 30, 2022, GLOBAL GENES REMAINED THE PRIMARY OPERATING ENTITY AND RARE-X BECAME A PROGRAM OF GLOBAL GENES. THE RARE-X PROGRAM PROVIDES AN ACCESSIBLE DATA PLATFORM TO FACILITATE SHARING LARGE, HIGH-QUALITY DATA SETS TO ACCELERATE EARLY RESEARCH, DISCOVERY, FUTURE THERAPIES, AND CURES ACROSS DISEASES. 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 A, LINE 2 TIM O'CONNOR/NPSS CORPORATION - HUSBAND OF MARY K. O'CONNOR, EMPLOYEE RAY SOTO/NPSS CORPORATION - EX-HUSBAND OF KRISTIN SOTO, EMPLOYEE FORM 990, PART VI, SECTION A, LINE 4 ON DECEMBER 30, 2022, GLOBAL GENES AND RARE-X MERGED. THE SURVIVING ORGANIZATION IS GLOBAL GENES. RARE-X PROVIDED A COLLABORATIVE PLATFORM FOR GLOBAL DATA SHARING AND ANALYSIS TO ACCELERATE TREATMENTS FOR RARE DISEASE. WITH THE MERGER, GLOBAL GENES SEEKS TO FURTHER ITS CHARITABLE MISSION OF EMPOWERING NEXT-GENERATION ADVOCATES TO DRIVE PROGRESS WITHIN AND ACROSS RARE DISEASES, PROVIDING RARE DISEASE ADVOCATES WITH A CONTINUUM OF SERVICES, RESOURCES AND CONNECTIONS TO ACCELERATE THE PATH FROM INITIAL SUPPORT AND AWARENESS THROUGH DIAGNOSIS, DRUG DEVELOPMENT AND ACCESS TO TREATMENTS, USING A COLLABORATIVE APPROACH THAT INVOLVES BIOPHARMA, CLINICIANS, RESEARCHERS AND FUNDERS, AND FACILITATING ACCESS TO INFORMATION AND RESOURCES TO THOSE AFFECTED BY RARE DISEASES AROUND THE GLOBE. THE COMBINED ORGANIZATION WILL ALSO BENEFIT FROM COMPLEMENTARY PROGRAMMING, TALENT, GLOBAL BRAND RECOGNITION, AND REACH OF EACH PARTY. THE PARTIES BELIEVE THAT THEIR RESPECTIVE MISSIONS WILL BE ACHIEVED BEST BY CREATING A SINGLE, INTEGRATED ORGANIZATION TO PROVIDE FOR THE COMMUNITY AS OUTLINED ABOVE. THERE WERE NO MATERIAL ADJUSTMENTS TO CONFORM THE ACCOUNTING POLICIES OF THE COMBINING ORGANIZATIONS. FORM 990, PART VI, SECTION B, LINE 11B LINE 11B EXPLANATION - FORM 990 IS SENT TO ALL BOARD OF DIRECTORS MEMBERS FOR THEIR REVIEW AND APPROVAL BEFORE FILING. FORM 990, PART VI, SECTION B, LINE 12C BOARD OF DIRECTORS MEMBERS ARE REQUIRED TO DISCLOSE ANY CONFLICT OF INTEREST ANNUALLY. FORM 990, PART VI, SECTION B, LINE 15 AS A RESULT OF THE MERGED ORGANIZATION, THE NEWLY FORMED COMPENSATION COMMITTEE MET IN Q2 24 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 XII, LINE 2C: THE PROCESS HAS NOT CHANGED FROM THE PRIOR YEAR.