2023-11-14T15:59:33-06:00 2022-12-31 410746749 CLIFTONLARSONALLEN LLP 2875 MICHELLE DRIVE 300 IRVINE CA 92606 990 2022-01-01 263331487 GLOBAL GENES GLOB 9492487273 28 ARGONAUT SUITE 150 ALISO VIEJO CA 92656 PETER PELLIZZON BOARD CHAIRMAN 9492487273 2023-11-13 1 PETER PELLIZZON 999009999 1 LISA RYSSEL P00643670 7149781300 2023-11-13 2 AAL1 IAL1 2022 2023-04-26 12:10:37Z CRAIG MARTIN 28 ARGONAUT SUITE 150 ALISO VIEJO CA 92656 5673721 0 X GLOBALGENES.ORG X 2008 CA INCREASE PUBLIC AWARENESS FOR RARE DISEASE AND GLOBALLY CONNECT, EMPOWER AND EDUCATE INDIVIDUALS AND RARE DISEASE FOUNDATIONS IN PERSON, PRINT AND ONLINE. 8 8 36 12 0 0 4169975 3865176 1715904 1690520 -1882 1739 0 0 5883997 5557435 268030 469253 0 0 2115223 2572193 0 0 435787 3174164 4658743 5557417 7700189 326580 -2142754 3315841 2294462 947013 1753204 2368828 541258 GLOBAL GENES' MISSION IS TO CONNECT, EMPOWER AND INSPIRE THE RARE DISEASE COMMUNITY. 0 0 6222906 469253 1690520 OUTREACH SERVICESPROVIDE CAPACITY BUILDING EDUCATIONAL AND CONNECTIVE NETWORKING OPPORTUNITIES TO PATIENTS, CAREGIVERS AND DISEASE FOUNDATIONS VIA IN PERSON MEETINGS, PRINT AND ONLINE TOOLS AND ONLINE EDUCATION. 6222906 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 1 0 0 0 0 0 0 0 0 0 0 0 1 27 0 1 36 1 0 0 0 0 0 0 0 0 0 0 0 0 X 8 8 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 CRAIG MARTIN INTERIM CEO 40.00 X 420000 0 0 CHRISTOPHER NUNES FINANCE DIRECTOR 40.00 X 65001 0 0 LAUREN ALFORD SENIOR DIRECTOR, MARKETING COMMUNICATIONS 40.00 X 160475 0 78 VICTORIA WEISS SENIOR DIRECTOR, FINANCE 40.00 X 23750 0 0 MARY K O'CONNOR SENIOR DIRECTOR, DEVELOPMENT 40.00 X 143684 0 5850 MARIA DELLA ROCCA SENIOR DIRECTOR, SUPPORT & EDUCATION 40.00 X 146875 0 81 TIM EHRHARD SENIOR DIRECTOR, IT 40.00 X 158312 0 78 SHANKAR RAMKELLAWAN MANAGER, DATA SCIENCE & INSIGHTS 40.00 X 111064 0 4847 NICOLE BOICE FOUNDER 10.00 X X 0 0 0 PETER PELLIZZON BOARD CHAIRMAN 1.00 X X 0 0 0 CAROLINE LOEWY TREASURER 1.00 X X 0 0 0 JOHN CROWLEY DIRECTOR 1.00 X 0 0 0 CHRISTINA M HARTMAN SECRETARY 1.00 X X 0 0 0 HUGH HEMPEL DIRECTOR 1.00 X 0 0 0 NEIL KUMAR DIRECTOR 1.00 X 0 0 0 INDU NAVAR DIRECTOR 1.00 X 0 0 0 1229161 0 10934 6 0 1 0 RITHM HEALTH 54 MORTON STREET ANDOVER MA 01810 CONSULTING SERVICES 420000 MSG CONSULTING 838 DARLINGTON AVENUE MAHWAH NJ 07430 CONSULTING SERVICES 206281 LEVINE MEDIA GROUP 21 KINGSTON RD KENSINGTON CA 94707 EDITORIAL SERVICES 154900 LCBI LTD 141 WICKMAN RD SHIRLEY CROYDON UK CONSULTING SERVICES 118238 4 3865176 3865176 MEMBERSHIP FEES 900099 1230634 1230634 CONFERENCE SPONSORSHIP 900099 445400 445400 EXHIBIT BOOTHS 900099 14486 14486 1690520 1597 1597 50906 65522 50287 65999 619 -477 142 142 5557435 1690520 0 1739 221259 221259 247994 247994 508751 305251 50875 152625 1812826 1442206 248224 122396 48332 36380 6227 5725 202284 151713 26297 24274 12155 12155 99185 99185 57420 57420 25113 22042 3071 611619 491150 120469 84772 84772 618632 614398 4234 1149 1149 10917 10917 18725 10531 6509 1685 SUPPLIES 1290517 1277756 12761 0 OUTSIDE SERVICES 1227671 843800 257871 126000 PROGRAM AWARENESS 487625 487625 FEES AND TAXES 56272 679 55593 56971 11553 42336 3082 7700189 6222906 1041496 435787 1236090 945899 1693150 425887 372750 59565 160977 1246 307820 332882 207533 205008 11394 2525 6576 53542 3315841 2294462 439509 1228794 507504 473927 0 50483 947013 1753204 X 2368828 541258 2368828 541258 3315841 2294462 X -2142754 6163 309021 X X 0 1 X 1 0 X 4955803 5297898 3581873 4169975 3865176 21870725 4955803 5297898 3581873 4169975 3865176 21870725 3761200 18109525 1250 23101 11307 940 1597 38195 142 142 21909062 1690520 0.82660 0.80790 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 204337 201812 2525 3196 3196 0 2525 LONG TERM OPERATING LEASE LIABILITIES 50483 50483 X 5563598 6163 6163 5557435 0 5557435 7700189 0 7700189 0 7700189 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 240494 SUB-SAHARAN AFRICA GRANTS TO RECIPIENTS 7500 0 0 0 0 0 0 247994 0 247994 SUB-SAHARAN AFRICA MEET-UPS GRANTS 7500 0 EUROPE (INCLUDING ICELAND & GREENLAND) UKRAINE/RARE RELIEF GRANT 30000 0 EUROPE (INCLUDING ICELAND & GREENLAND) UKRAINE/RARE RELIEF GRANT 20000 0 EUROPE (INCLUDING ICELAND & GREENLAND) UKRAINE/RARE RELIEF GRANT 30000 0 EUROPE (INCLUDING ICELAND & GREENLAND) UKRAINE/RARE RELIEF GRANT 20000 0 EUROPE (INCLUDING ICELAND & GREENLAND) UKRAINE/RARE RELIEF GRANT 20000 0 EUROPE (INCLUDING ICELAND & GREENLAND) UKRAINE/RARE RELIEF GRANT 48494 0 EUROPE (INCLUDING ICELAND & GREENLAND) UKRAINE/RARE RELIEF GRANT 50000 0 EUROPE (INCLUDING ICELAND & GREENLAND) HEALTH EQUITY GRANT 15000 0 0 9 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. PART III ACCOUNTING METHOD: 1 PRADER-WILLI SYNDROME ASSOCIATION USA 1032 E BRANDON BLVD 4744 BRANDON FL 33511 411306908 501(C)(3) 7500 0 FAIR GRANT TEAM TELOMERE INC 1801 N 3RD STREET 7 COEUR DALENE ID 10028 263776187 501(C)(3) 7500 0 FAIR GRANT ALAAFIA WOMEN'S CORPORATION 1037 W MCKINLEY AVE MILWAUKEE WI 53205 844761643 501(C)(3) 7500 0 FAIR GRANT DREAMSICKLE KIDS FOUNDATION INC 6895 E LAKE MEAD SUITE 6 204 LAS VEGAS NV 89156 824557748 501(C)(3) 7500 0 FAIR GRANT INDO US ORGANIZATION FOR RARE DISEASES 13687 NEIL ARMSTRONG AVE HERNDON VA 20171 HERNDON VA 20171 843794099 501(C)(3) 7500 0 FAIR GRANT FOUNDATION FOR SARCOIDOSIS RESEARCH (19) 320 W OHIO STREET SUITE 300 CHICAGO IL 60654 364378232 501(C)(3) 7500 0 FAIR GRANT FIBROUS DYSPLASIA FOUNDATION BOX 1199 4701 SANGAMORE ROAD SUITE 100N BETHESDA MD 20816 020715210 501(C)(3) 6560 0 FAIR GRANT THE GLOBAL FOUNDATION FOR PEROXISOMAL DIS PO BOX 33238 TULSA OK 74153 273646193 501(C)(3) 7500 0 FAIR GRANT RAYMOND A WOOD FOUNDATION 12417 OCEAN GATEWAY SUITE B11 108 OCEAN CITY MD 21842 814548646 501(C)(3) 13921 0 HEALTH EQUITY GRANT MYHRE SYNDROME FOUNDATION 25 CREEKWOOD CIRCLE RICHARDSON TX 75080 834086943 501(C)(3) 14865 0 HEALTH EQUITY GRANT TEAM TELOMERE INC 1801 N 3RD STREET 7 COEUR DALENE ID 10028 263776187 501(C)(3) 15000 0 HEALTH EQUITY GRANT PFIC NETWORK INC PO BOX 551 STANTON KY 40380 831084501 501(C)(3) 15000 0 HEALTH EQUITY GRANT SCN2A ASIA PACIFIC 2367 CARSON DRIVE ALLISON PARK PA 15101 759675717 501(C)(3) 15000 0 HEALTH EQUITY GRANT CYSTIC FIBROSIS RESEARCH INC (18) 1731 EMBARCADERO ROADSUITE 210 PALO ALTO CA 94303 510169988 501(C)(3) 10000 0 HEALTH EQUITY GRANT COMBINEDBRAIN INC 1510 OLD HICKORY BLVD BRENTWOOD TN 37027 831825692 501(C)(3) 15000 0 HEALTH EQUITY GRANT BLEEDING DISORDERS ALLIANCE OF ILLINOIS 210 S DESPLAINES STBDAI CHICAGO IL 60661 362390156 501(C)(3) 15000 0 MEET-UPS GRANTS PHELAN-MCDERMID SYNDROME FOUNDATION 8 SORRENTO DRIVE OSPREY FL 34229 043673104 501(C)(3) 14000 0 MEET-UPS GRANTS CONGENITAL HYPERINSULINISM INTERNATIONAL PO BOX 135 GLEN RIDGE NJ 07028 203068945 501(C)(3) 11137 0 MEET-UPS GRANTS HELPING HANDS FOR GAND INC PO BOX 5304 HUNTSVILLE AL 35814 475166628 501(C)(3) 15000 0 MEET-UPS GRANTS YOUNGTIMERS INC 887 W 15TH STREET APT A203 NEWPORT BEACH CA 92663 852782466 501(C)(3) 8276 0 MEET-UPS GRANTS 20 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 0 0 0 0 0 0 0 0 0 CRAIG MARTIN INTERIM CEO 420000 0 0 0 0 0 0 0 0 0 420000 0 0 0 LAUREN ALFORD SENIOR DIRECTOR, MARKETING COMMUNICA 160475 0 0 0 0 0 0 0 78 0 160553 0 0 0 TIM EHRHARD SENIOR DIRECTOR, IT 158312 0 0 0 0 0 0 0 78 0 158390 0 0 0 CRAIG MARTIN INTERIM CEO 420000 CONSULTING SERVICES 0 SCHEDULE L PART V CRAIG MARTIN, THE INTERIM CEO, OF THE ORGANIZATION IS THE THE OWNER OF RITHM HEALTH AND WAS PAID $420,000 FOR CONSULTING SERVICES. FORM 990, PART VI, SECTION A, LINE 2 TIM O'CONNOR/NPSS CORPORATION - HUSBAND OF MARY K. O'ONNOR, 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 FILE A SIGNED CONFLICT OF INTEREST AGREEMENT ANNUALLY. FORM 990, PART VI, SECTION B, LINE 15 BOARD REVIEWS AND APPROVES BY VOTE ALL OTHER OFFICER'S SALARIES ON AN ANNUAL BASIS DURING CLOSED SESSION OF THE FIRST BOARD OF DIRECTORS MEETING OF THE YEAR. BOARD REVIEWS AND APPROVES BY VOTE ALL EXECUTIVE SALARIES ON AN ANNUAL BASIS DURING CLOSED SESSION OF THE FIRST BOARD OF DIRECTORS MEETING OF THE YEAR. THE PROCESS DESCRIBED HERE WAS LAST COMPLETED IN 2022. FORM 990, PART VI, SECTION C, LINE 19 THE ORGANIZATION MAKES ITS FINANCIAL STATEMENTS AVAILABLE ON ITS OWN WEBSITE. GOVERNING DOCUMENTS AND CONFLICT OF INTEREST POLICY ARE AVAILABLE UPON REQUEST. FORM 990, PART XI, LINE 9: MERGER - RARE - X NET ASSETS 309,021. FORM 990, PART XII, LINE 2C: THE PROCESS HAS NOT CHANGED FROM THE PRIOR YEAR.