2024-05-31T10:29:41-05:00 2023-12-31 042571780 AAFCPAS INC 50 WASHINGTON STREET WESTBOROUGH MA 01581 990 2023-01-01 133223946 NATIONAL ORGANIZATION FOR RARE DISORDERS INC NATI 6172497300 1900 CROWN COLONY DR 3RD FL 310 QUINCY MA 02169 NEETA KOTECHA VICE PRESIDENT OF FINANCE 6172497300 2024-05-29 1 NEETA KOTECHA XXX-XX-XXXX 1 COURTNEY MCFARLAND CPA P01645518 5083669100 2024-05-29 2 AAL1 IAL1 2023 2023-04-26 12:10:37Z NEETA KOTECHA 1900 CROWN COLONY DR 3RD FL 310 QUINCY MA 02169 78244851 0 X WWW.RAREDISEASES.ORG X 1983 NY NORD STRIVES TO IMPROVE THE HEALTH AND WELL-BEING OF PEOPLE WITH RARE DISEASES BY DRIVING ADVANCES IN CARE, RESEARCH, AND POLICY. 13 12 118 1893 0 0 51401122 55591572 8070658 8312225 400603 2493656 0 0 59872383 66397453 33039892 35012233 0 0 10723039 11769993 0 0 2704860 4657808 6050513 48420739 52832739 11451644 13564714 49542120 65154464 3237579 4533021 46304541 60621443 X NORD STRIVES TO IMPROVE THE HEALTH AND WELL-BEING OF PEOPLE WITH RARE DISEASES BY DRIVING ADVANCES IN CARE, RESEARCH, AND POLICY. 0 0 39083235 35012233 5608758 PATIENT ASSISTANCE PROGRAMS PROVIDE FINANCIAL ASSISTANCE TO HELP ELIGIBLE PATIENTS ACCESS LIFESAVING THERAPIES AND SERVICES PRESCRIBED BY THEIR PHYSICIANS. IN 2023 NORD PROVIDED FINANCIAL ASSISTANCE TO 5,068 PEOPLE WITH RARE DISEASES. IN ADDITION, NORD WORKS WITH ORGANIZATIONS CONDUCTING CLINICAL TRIALS OF NEW TREATMENTS IN ARRANGING FOR PATIENTS WITH RARE DISEASES AND FAMILY MEMBERS TO TRAVEL TO THE SITES WHERE THE TRIALS ARE BEING CONDUCTED. IN 2023, THERE WERE 155 PATIENTS THAT NORD ASSISTED AS PART OF THAT SPECIAL CLINICAL TRIAL TRAVEL ASSISTANCE PROGRAM. 1195186 NORD'S ADVOCACY EFFORTS ARE FOCUSED ON SERVING AS A LIAISON BETWEEN THE RARE DISEASE COMMUNITY AND THE VARIOUS ORGANIZATIONS AND INSTITUTIONS THAT HAVE A DIRECT IMPACT ON THE LIVES OF THE 30 MILLION AMERICANS LIVING WITH RARE DISEASES. NORD ENGAGES ALL TYPES OF ORGANZIATIONS, INCLUDING STATE AND FEDERAL AGENCIES AND LEGISLATORS, OTHER NON-PROFIT ORGANIZATIONS, AND FOR-PROFIT ORGANIZATIONS TO HELP RAISE AWARENESS AROUND THE NEEDS OF RARE DISEASE PATIENTS AND TO COLLECTIVELY CONTRIBUTE TO REALIZING SOLUTIONS THAT CAN POSITIVELY IMPACT THE DIVERSE RARE DISEASE COMMUNITY. 3399451 527465 IN 2023, NORD HAS CONTINUED TO DEVELOP ITS NATURAL HISTORY/REGISTRY PLATFORM TO HELP RESEARCHERS BETTER UNDERSTAND THE PATIENT EXPERIENCE AND PROMOTE DEVELOPMENT OF INNOVATIVE, SAFE AND EFFECTIVE THERAPIES. AS OF DECEMBER 31, 2023, THERE WERE 14,923 PARTICIPANTS ACROSS 35 REGISTRIES. 1818942 2176002 NORD'S EDUCATIONAL INITIATIVES STRIVE TO EMPOWER PATIENTS AND THEIR FAMILIES, INFORM AND EDUCATE STUDENTS ACROSS DISCIPLINES FROM HIGH SCHOOL THROUGH GRADUATE SCHOOL, AND SUPPORT THE VITALLY IMPORTANT WORK OF PHYSICIANS AND OTHER HEALTHCARE PROFESSIONALS IN IMPROVING THE RECOGNITION OF SYMPTOMS OF RARE DISEASE AND EARLY, ACCURATE DIAGNOSIS AS WELL AS IMPROVING CLINICIAN KNOWLEDGE AND COMPETENCE IN TREATING RARE DISEASES. THIS IS DONE THROUGH THE DEVELOPMENT OF NORD'S RARE DISEASE DATABASE, THE DELIVERY OF RARE DISEASE VIDEOS AND WEBINARS, AND THROUGH ROBUST EDUCATIONAL PROGRAMMING WITH NORD'S CME PROGRAM AND AT THE LIVING RARE, LIVING STRONGER NORD PATIENT AND FAMILY FORUM AND THE NORD RARE DISEASES AND ORPHAN PRODUCTS SUMMIT. IN 2023, 754 PEOPLE ATTENDED THE NORD SUMMIT IN PERSON, AND 61 PEOPLE REGISTERED FOR VIRTUAL STREAMING OF THE MEETING. ALSO, IN 2023, THERE WERE OVER 20 MILLION VISITORS TO NORD'S RARE DISEASE DATABASE. 424318 AS THE LEADING RARE DISEASE UMBRELLA ORGANIZATION IN THE UNITED STATES, THE NATIONAL ORGANIZATION FOR RARE DISORDERS PROVIDES OUR MEMBER ORGANIZATIONS WITH HIGH-TOUCH SUPPORT IN ADVOCACY, EDUCATIONS, RESEARCH, PROFESSIONAL DEVELOPMENT AND COMMUNICATIONS. OUR PROGRAMS AND SERVICES OFFER ALL OF THE TOOLS ORGANIZATIONAL LEADERS AND MEMBERS NEED TO STAY CONNECTED AND UP-TO-DATE ON CRITICAL INFORMATION WHILE LAUNCHING, GROWING AND EVOLVING THEIR ORGANIZATIONS. AS OF DECEMBER 2023, NORD HAD 341 MEMBER PATIENT ORGANIZATIONS. 640360 THE NORD RARE DISEASE CENTERS OF EXCELLENCE PROGRAM WAS ESTABLISHED TO SELECT AND TO COLLABORATE WITH A NETWORK OF US MEDICAL INSTITUTIONS WITH EXCEPTIONAL CLINICAL AND RESEARCH PROGRAMS FOR PATIENTS WITH RARE DISEASES, WHO WILL WORK COLLABORATIVELY WITH NORD, WITH ONE ANOTHER, AND WITH THEIR LOCAL COMMUNITIES OF PHYSICIANS, CAREGIVERS, AND PATIENTS TO SHARE EXPERT KNOWLEDGE, DEFINE STANDARDS OF PRACTICE FOR RARE DISEASES, ACCELERATE DIAGNOSIS, AND IMPROVE PATIENT CARE, TREATMENT, AND RESEARCH IN RARE DISEASES. AS OF DECEMBER 2023, THERE WERE 40 DESIGNATED NORD RARE DISEASE CENTERS OF EXCELLENCE. 2883620 2176002 46561492 1 1 0 1 0 0 0 0 0 1 1 0 0 0 1 1 1 0 0 0 1 1 1 0 0 0 0 1 1 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1 58 0 1 118 1 0 0 0 0 0 0 0 0 0 0 0 0 X 13 12 0 0 0 0 0 0 0 1 1 0 1 1 1 1 1 1 1 1 1 1 0 CT NY AL CA FL GA IL KS KY MA MD MI MN MS NC NH NJ NM OK OR PA RI SC TN UT VA WI WV AR HI X X NEETA KOTECHA 6172497300 1900 CROWN COLONY DRIVE 3RD FLOOR QUINCY MA 02169 PETER SALTONSTALL PRESIDENT/CEO 35.00 X X 496804 0 26404 KATHLEEN HOLCOMBE CHAIR 10.00 X X 0 0 0 DENNIS JACKMAN VICE CHAIR 1.00 X X 0 0 0 LEON EIDELMAN TREASURER 5.00 X X 0 0 0 JIM PALMA SECRETARY 1.00 X X 0 0 0 MARK SKINNER DIRECTOR 5.00 X 0 0 0 SUSAN BERRY MD DIRECTOR 1.00 X 0 0 0 SHAFALI JESTE MD DIRECTOR 1.00 X 0 0 0 PHILLIP PEARL MD DIRECTOR 1.00 X 0 0 0 MIKE PORATH DIRECTOR 1.00 X 0 0 0 TOM KELLY DIRECTOR (AS OF 5/4/23) 1.00 X 0 0 0 SHELDON SCHUSTER PHD DIRECTOR (AS OF 5/4/23) 1.00 X 0 0 0 LORNA WEIR DIRECTOR (AS OF 5/4/23) 1.00 X 0 0 0 STEVEN GROSSMAN DIRECTOR (UNTIL 1/31/23) 1.00 X 0 0 0 PAMELA GAVIN EXECUTIVE VICE PRESIDENT 35.00 X 390823 0 31910 NEETA KOTECHA VP FINANCE 35.00 X 177102 0 38575 EDWARD NEILAN CHIEF MEDICAL & SCIENTIFIC OFFICER 35.00 X 270662 0 58975 PRASHANT GOEL VP INFORMATION TECHNOLOGY 35.00 X 282667 0 14531 ALEXA MOORE VP OF DEVELOPMENT 35.00 X 235028 0 11747 JILL POLLANDER VP PATIENT SERVICES 35.00 X 179475 0 23972 LISA SARFATY VP COMMUNITY ENGAGEMENT 35.00 X 173427 0 54480 2205988 0 260594 29 0 1 0 FUTURE DMZ FUTURE LIMO 67-1185 MAMALAHOA HWY D104 KAMUELA HI 96743 PATIENT SERVICES 271585 ZUCKERMAN SPAEDER LLP 1800 M STREET NW SUITE 1000 WASHINGTON DC 20036 LEGAL SERVICES 106386 2 1915500 1927961 51748111 5979 55591572 PATIENT ASSISTANCE FEE 624100 5476039 5476039 PROGRAMMATIC EVENTS AN 624100 1872169 1872169 REGISTRY, WEB SUBSCRIP 624100 752405 752405 DRUG, TRAVEL AND LODGI 624100 132718 132718 RESEARCH FEES 624100 78894 78894 8312225 1751860 1751860 11289194 1300000 11295979 551419 -6785 748581 741796 741796 66397453 8312225 0 2493656 238574 238574 34397934 34397934 375725 375725 1161618 684337 215677 261604 8256602 5380865 1813229 1062508 369432 242893 85322 41217 1344546 1139074 205472 637795 352015 209598 76182 156601 109243 26094 21264 60100 60100 145323 105356 39967 53587 53587 1680239 1140936 227056 312247 580005 125102 365139 89764 534328 223706 270494 40128 45353 35667 25 9661 1530428 1059605 58988 411835 754550 627298 19505 107747 MISCELLANEOUS 480865 294028 121606 65231 RESEARCH GRANT EXPENSE 29134 29134 52832739 46561492 3566387 2704860 4177517 4078715 3011578 4021694 11078737 20885685 232983 371112 6017087 4107240 1140696 1909847 28353706 33249776 106140 108039 1440763 529596 49542120 65154464 1421641 2676954 971652 672379 214816 513639 90440 539030 670049 3237579 4533021 X 8520052 11194506 37784489 49426937 46304541 60621443 49542120 65154464 13564714 752188 0 X X 0 1 X 1 1 1 X 43644020 36711628 36851836 51401122 55591572 224200178 43644020 36711628 36851836 51401122 55591572 224200178 151945993 72254185 595629 517289 223148 415150 1751860 3503076 227703254 36823582 0.31730 0.35720 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 5450 139873 145323 52687416 52832739 1000000 250000 0 0 1000000 1000000 1000000 1000000 4000000 6000000 373751 172678 154106 145323 845858 250000 250000 250000 250000 1000000 1500000 120306 44421 5779 5450 175956 221500 221500 221500 221500 200000 21500 221500 200000 200000 1.00000 0 0 31731 31326 405 5985356 4075914 1909442 1909847 DEFERRED COMPENSATION 129004 OPERATING LEASE LIABILITY 541045 670049 X 67172054 752188 76000 828188 66343866 53587 53587 66397453 52855152 76000 76000 52779152 53587 53587 52832739 PART V, LINE 4: NORD DEVELOPED A FORMAL ENDOWMENT SPENDING POLICY WHERE AS THE CORPUS SHALL NOT BE USED TO PAY CURRENT EXPENSES, OTHER THAN INVESTMENT SERVICE FEES. THE CORPUS SHALL BE INVESTED AND RETURNS MAY BE USED BY NORD ON AN ANNUAL BASIS, STARTING THREE YEARS AFTER THE FUNDS ARE INVESTED. THE ANNUAL SPENDING WILL BE CALCULATED AS THE GREATER OF ZERO OR HALF OF THE AVERAGE ANNUAL RETURN OVER THE PRIOR THREE YEARS, CALCULATED FROM THE CALENDAR YEAR-END BALANCE. NORD MAY DECIDE AT ITS DISCRETION TO DELAY OR FOREGO THE ANNUAL WITHDRAWAL FROM THE PORTFOLIO. NORD WILL NOT SPEND ENDOWED FUNDS FROM THE ENDOWMENT UNTIL AFTER MARCH 2024, THREE YEARS AFTER THE INITIAL INVESTMENT. PART X, LINE 2: NORD ACCOUNTS FOR UNCERTAINTY IN INCOME TAXES IN ACCORDANCE WITH ASC TOPIC, INCOME TAXES. THIS STANDARD CLARIFIES THE ACCOUNTING FOR UNCERTAINTY IN TAX POSITIONS AND PRESCRIBES A RECOGNITION THRESHOLD AND MEASUREMENT ATTRIBUTE FOR THE FINANCIAL STATEMENTS REGARDING A TAX POSITION TAKEN OR EXPECTED TO BE TAKEN IN A TAX RETURN. NORD HAS DETERMINED THAT THERE ARE NO UNCERTAIN TAX POSITIONS WHICH QUALIFY FOR EITHER RECOGNITION OR DISCLOSURE IN THE FINANCIAL STATEMENTS AT DECEMBER 31, 2023. NORD'S INFORMATION RETURNS ARE SUBJECT TO EXAMINATION BY THE FEDERAL AND STATE JURISDICTIONS. 1 EUROPE (INCLUDING ICELAND & GREENLAND) 0 0 GRANTS TO RECIPIENTS 91096 NORTH AMERICA 0 0 GRANTS TO RECIPIENTS 80756 SOUTH ASIA 0 0 GRANTS TO RECIPIENTS 202058 EAST ASIA AND THE PACIFIC 0 0 GRANTS TO RECIPIENTS 1815 0 0 0 0 0 0 375725 0 375725 SOUTH ASIA - AFGHANISTAN, BANGLADESH, BHUTAN, INDIA, MALDIVES, NEPAL, SOFTWARE IN DEVELOPMENT 202058 BANK OF AMERICA INTERNATIONAL WIRE 0 BOOK NORTH AMERICA - CANADA AND MEXICO, BUT NOT THE UNITED STATES PATIENT FOCUSED DRUG DEVELOPMENT/CONSULTING 6000 CHECK 0 BOOK EUROPE (INCLUDING ICELAND & GREENLAND) RESEARCH GRANT PAYABLE 25000 WIRE 0 BOOK NORTH AMERICA RESEARCH GRANT PAYABLE 25000 WIRE 0 BOOK EUROPE (INCLUDING ICELAND & GREENLAND) RESEARCH GRANT PAYABLE 31032 WIRE 0 BOOK EUROPE (INCLUDING ICELAND & GREENLAND) RESEARCH SUPPORT UNIT 23800 WIRE 0 BOOK 8 CONSULTANT NORTH AMERICA 1 43038 WIRE BOOK TRAVEL REIMBURSEMENT NORTH AMERICA 1 5925 WIRE BOOK TRAVEL REIMBURSEMENT EUROPE (INCLUDING ICELAND & GREENLAND) 1 5387 WIRE BOOK 0 0 0 0 0 0 PART I, LINE 2: ANY GRANTS AND SUPPORT GIVEN ARE CLOSELY MONITORED VIA REVIEW OF BACKUP DOCUMENTATION AND PROOF OF EXPENSE. 1 TRUSTEES OF THE UNIVERSITY OF PENNSYLVANIA 3451 WALNUT STREET 5TH FLOOR FRANKLIN BUILDING PHILADELPHIA PA 191046205 231352685 501C3 47625 0 BILIARY ATRESIA RESEARCH ANN & ROBERT H LURIE CHILDREN'S HOSPITAL OF CHICAGO 225 E CHICAGO AVE BOX 271 CHICAGO IL 60611 362170833 30350 0 BILIARY ATRESIA GRANT AWARD - LURIE CHILDREN'S CINCINNATI CHILDREN'S HOSPITAL MEDICAL CENTER 3333 BURNET AVENUE CINCINNATI OH 45229 310833936 501C3 25000 0 ACDMPV RESEARCH AT CHILDREN'S HOSPITAL DUKE UNIVERSITY OFFICE OF SPONSORED PROGRAMS PO BOX 602651 CHARLOTTE NC 282602651 560532129 501C3 25000 0 RESEARCH GRANT AWARD - MALONIC ACIDURIA - PROF. FILIANO THE UNIVERSITY OF CHICAGO 6054 SOUTH DREXEL AVE SUITE 300 CHICAGO IL 60619 362177139 25000 0 RESEARCH GRANT AWARD WAKE FOREST UNIVERSITY HEALTH SCIENCES MEDICAL CENTER BOULEVARD WINSTONSALEM NC 27157 223849199 25000 0 ACPMP GRANT AWARD WFUHS WAKE FOREST UNIVERSITY HEALTH SCIENCES MEDICAL CENTER BOULEVARD WINSTONSALEM NC 27157 223849199 25000 0 ACPMP SEED FUNDING AWARD - WAKE FOREST CHILDREN'S HOSPITAL OF PHILADELPHIA 3401 CIVIC CENTER BLVD PHILADELPHIA PA 191044318 231352166 23099 0 NORSE/FIRES RESEARCH GRANT AWARD H LEE MOFFITT CANCER CENTER & RESEARCH INST 12902 MAGNOLIA DRIVE -MBC-OSR TAMPA FL 336129416 592451713 12500 0 ACPMP RESEARCH GRANT AWARD 3 6 PATIENT ASSISTANCE PROGRAMS 5223 34397934 BOOK PART I, LINE 2: ANY GRANTS AND SUPPORT GIVEN ARE CLOSELY MONITORED VIA REVIEW OF BACKUP DOCUMENTATION AND PROOF OF EXPENSE. X X X 0 0 0 0 0 0 0 0 0 PETER SALTONSTALL PRESIDENT/CEO 481804 0 15000 0 0 0 16500 0 9904 0 523208 0 0 0 PAMELA GAVIN EXECUTIVE VICE PRESIDENT 365823 0 25000 0 0 0 16500 0 15410 0 422733 0 0 0 EDWARD NEILAN CHIEF MEDICAL & SCIENTIFIC OFFICER 270662 0 0 0 0 0 14420 0 44555 0 329637 0 0 0 PRASHANT GOEL VP INFORMATION TECHNOLOGY 275167 0 7500 0 0 0 14167 0 364 0 297198 0 0 0 ALEXA MOORE VP OF DEVELOPMENT 215028 0 20000 0 0 0 11747 0 0 0 246775 0 0 0 LISA SARFATY VP COMMUNITY ENGAGEMENT 170927 0 2500 0 0 0 9137 0 45343 0 227907 0 0 0 NEETA KOTECHA VP FINANCE 174602 0 2500 0 0 0 9137 0 29438 0 215677 0 0 0 JILL POLLANDER VP PATIENT SERVICES 176975 0 2500 0 0 0 9137 0 14835 0 203447 0 0 0 PART I, LINE 3 THE BOARD OF DIRECTORS REVIEWS EXTERNAL SURVEYS, DOL, BLS, AND ACCOUNTEMP SURVEYS FOR DECISIONS ON THE EXECUTIVE DIRECTOR'S COMPENSATION. THERE IS ALSO A SALARY ADMINISTRATION PLAN THAT TAKES INTO CONSIDERATION GEOGRAPHIC SETTINGS, SKILLS, AND EDUCATION. FORM 990, PART VI, SECTION B, LINE 11B THE 990 IS REVIEWED BY THE VP OF FINANCE, CEO, FINANCE COMMITTEE, AND AUDIT COMMITTEE PRIOR TO FILING. THE 990 IS PROVIDED TO ALL MEMBERS OF THE BOARD OF DIRECTORS FOR REVIEW PRIOR TO BEING FILED. FORM 990, PART VI, SECTION B, LINE 12C THE BOARD OF DIRECTORS ARE REQUIRED TO COMPLETE AN ANNUAL REVIEW OF THE ORGANIZATION'S CONFLICT OF INTEREST POLICY. THE MEMBERS OF THE BOARD ARE ANNUALLY REQUIRED TO REPORT IF THEY HAVE OR DO NOT HAVE ANY KNOWN CONFLICTS OF INTEREST. THE EXECUTIVE COMMITTEE IS ALSO REQUIRED TO ANNUALLY SIGN OFF AS TO ANY KNOWN CONFLICTS THAT EXIST. FORM 990, PART VI, SECTION B, LINE 15 THE BOARD OF DIRECTORS REVIEWS EXTERNAL MARKET SURVEYS, DOL, BLS, AND ACCOUNTEMP SURVEYS FOR DECISIONS ON THE EXECUTIVE DIRECTOR COMPENSATION. THERE IS ALSO A SALARY ADMINISTRATION PLAN THAT TAKES INTO CONSIDERATION GEOGRAPHIC SETTINGS, SKILLS, AND EDUCATION. FORM 990, PART VI, SECTION C, LINE 19 GOVERNING DOCUMENTS ARE MADE AVAILABLE UPON REQUEST. FORM 990, PART XII, LINE 2C: THE BOARD OF DIRECTORS ASSUMES RESPONSIBILITY FOR OVERSIGHT OF THE AUDIT OF ITS FINANCIAL STATEMENTS AND SELECTION OF AN INDEPENDENT ACCOUNTANT.