2026-05-28T09:31:47-05:00 2025-12-31 042571780 AAFCPAS INC 50 WASHINGTON STREET WESTBOROUGH MA 01581 990 2025-01-01 133223946 NATIONAL ORGANIZATION FOR RARE DISORDERS INC NATI 6172497300 120 LONGWATER DRIVE 105 NORWELL MA 02061 NEETA KOTECHA VP AND CHIEF FINANCIAL OFFICER 6172497300 2026-05-27 1 CAITLIN LIMOGES CPA P01633588 5083669100 2026-05-27 2025 2025-03-06 01:10:19Z X NEETA KOTECHA 120 LONGWATER DRIVE 105 NORWELL MA 02061 43838797 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. 16 15 116 1308 0 0 40390497 23944805 7674762 7935317 2611539 2697074 0 0 50676798 34577196 23396846 22081890 0 0 12577235 12244648 0 0 3705242 7060381 6074573 43034462 40401111 7642336 -5823915 72321740 66900297 3745803 3268208 68575937 63632089 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 25200680 22081890 4936057 NORD'S PATIENT ASSISTANCE PROGRAMS PROVIDE ELIGIBLE INDIVIDUALS WITH FINANCIAL ASSISTANCE TO SUPPORT THE BROAD RANGE OF CARE AND TREATMENT NEEDS ASSOCIATED WITH MANAGING A RARE DISEASE. EACH DISEASE-SPECIFIC PROGRAM IS DESIGNED TO ADDRESS THE NUANCES OF THE INDIVIDUAL CONDITION AND THE UNIQUE NEEDS OF ITS PATIENT COMMUNITY. ASSISTANCE MAY INCLUDE SUPPORT FOR HEALTH INSURANCE PREMIUMS, COPAYMENTS, AND COINSURANCE, AS WELL AS CERTAIN COVERED OUT-OF-POCKET MEDICAL EXPENSES. NORD'S APPROACH ENSURES THAT ELIGIBLE INDIVIDUALS, WHETHER COMMERCIALLY INSURED, PUBLICLY INSURED, UNDERINSURED, OR UNINSURED, RECEIVE THE FINANCIAL SUPPORT NECESSARY TO ACCESS THE CARE AND TREATMENT PRESCRIBED BY THEIR HEALTH CARE PROVIDER(S). IN 2025, NORD'S PATIENT ASSISTANCE PROGRAMS PROVIDED FINANCIAL ASSISTANCE TO 6,880 INDIVIDUALS, INCLUDING 6,602 INDIVIDUALS SUPPORTED THROUGH OUR PAP AND 278 INDIVIDUALS WHO RECEIVED TRAVEL AND LODGING ASSISTANCE TO PARTICIPATE IN CLINICAL TRIALS. 1921195 2046711 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 OF MORE THAN 1,480 COMPREHENSIVE EXPERT-WRITTEN REPORTS ON SPECIFIC RARE DISORDERS, THE DELIVERY OF RARE DISEASE VIDEOS AND WEBINARS, AND THROUGH ROBUST EDUCATIONAL PROGRAMMING WITH NORD'S CME PROGRAM AND AT THE NORD RARE DISEASES AND ORPHAN PRODUCTS BREAKTHROUGH SUMMIT. IN 2025, 759 PEOPLE ATTENDED THE NORD SUMMIT IN PERSON, AND 60 PEOPLE REGISTERED TO ATTEND VIRTUALLY. ALSO, IN 2025, THERE WERE OVER 15 MILLION VISITORS TO NORD'S RARE DISEASE DATABASE. 3000676 952549 IN 2025, NORD CONTINUED TO ADVANCE THE IAMRARE NATURAL HISTORY AND REGISTRY PLATFORM TO STRENGTHEN RARE DISEASE RESEARCH AND IMPROVE THE PATIENT EXPERIENCE IN SUPPORT OF THERAPEUTIC DEVELOPMENT. MAJOR PLATFORM ENHANCEMENTS INCLUDED THE LAUNCH OF A REDESIGNED UI TO STREAMLINE NAVIGATION AND IMPROVE CROSS-BROWSER CONSISTENCY, AND THE RELEASE OF THE IAMRARE MOBILE APP WITH FEATURES SUCH AS PUSH NOTIFICATIONS FOR SURVEY REMINDERS AND DEVICE-LEVEL ACCESSIBILITY CONTROLS. AS OF DECEMBER 2025, THERE WERE 22,142 CONSENTED PARTICIPANTS ACROSS 51 REGISTRIES. IN ADDITION, DURING 2025, 10 NEW RARE DISEASE REGISTRIES WERE LAUNCHED, REPRESENTING THE LARGEST NUMBER INITIATED IN A SINGLE YEAR, AND THE RESEARCH TEAM WAS SUPPORTING THE DEVELOPMENT OF 24 ADDITIONAL REGISTRIES. 1085277 THE NATIONAL ORGANIZATION FOR RARE DISORDERS ENGAGES IN ADVOCACY EFFORTS THAT SERVE AS A LIAISON BETWEEN THE RARE DISEASE COMMUNITY AND THE ORGANIZATIONS AND INSTITUTIONS THAT HAVE A DIRECT IMPACT ON THE LIVES OF THE APPROXIMATELY 30 MILLION AMERICANS LIVING WITH RARE DISEASES. NORD WORKS WITH A WIDE RANGE OF STAKEHOLDERS, INCLUDING STATE AND FEDERAL AGENCIES AND LEGISLATORS, NONPROFIT ORGANIZATIONS, AND PRIVATE SECTOR PARTNERS TO RAISE AWARENESS OF THE NEEDS OF RARE DISEASE PATIENTS AND TO ADVANCE POLICIES AND INITIATIVES THAT IMPROVE CARE, TREATMENT, AND SUPPORT FOR THE RARE DISEASE COMMUNITY. 649212 THE NATIONAL ORGANIZATION FOR RARE DISORDERS IS THE LEADING RARE DISEASE UMBRELLA ORGANIZATION IN THE UNITED STATES, PROVIDING ITS MEMBER ORGANIZATIONS WITH SUPPORT IN ADVOCACY, EDUCATION, RESEARCH, PROFESSIONAL DEVELOPMENT, ORGANIZATIONAL LEADERSHIP, AND COMMUNICATIONS. THROUGH THESE PROGRAMS AND SERVICES, NORD EQUIPS LEADERS OF PATIENT ORGANIZATIONS WITH THE TOOLS AND RESOURCES NEEDED TO REMAIN INFORMED, CONNECTED, AND EFFECTIVE AS THEY ESTABLISH, GROW, AND STRENGTHEN THEIR ORGANIZATIONS. AS OF DECEMBER 2025, NORD SUPPORTED 360 MEMBER PATIENT ORGANIZATIONS. 920169 THE NORD RARE DISEASE CENTERS OF EXCELLENCE PROGRAM IDENTIFIES AND COLLABORATES WITH A NETWORK OF U.S. MEDICAL INSTITUTIONS THAT HAVE EXCEPTIONAL CLINICAL AND RESEARCH PROGRAMS SERVING PATIENTS WITH RARE DISEASES. THESE INSTITUTIONS WORK IN PARTNERSHIP 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. THROUGH THIS COLLABORATIVE NETWORK, THE PROGRAM HELPS ADVANCE BEST PRACTICES AND IMPROVE OUTCOMES FOR INDIVIDUALS LIVING WITH RARE DISEASES. AS OF DECEMBER 2025, THERE WERE 46 DESIGNATED RARE DISEASE CENTERS OF EXCELLENCE. 2654658 32777209 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 60 0 1 116 1 0 0 0 0 0 0 0 0 0 0 0 0 X 16 15 0 0 0 0 0 0 0 1 1 0 1 1 1 1 1 1 1 1 1 1 0 NY AL CA FL GA IL KS KY MA MD MI MN MS NC NH NJ NM OK OR PA RI SC TN VA WI WV AR HI ND UT X X NEETA KOTECHA 6172497300 120 LONGWATER DRIVE NORWELL MA 02061 PAMELA GAVIN CEO 35.00 X X 479961 0 32088 KATHLEEN HOLCOMBE CHAIR 10.00 X X 0 0 0 DENNIS JACKMAN VICE CHAIR 5.00 X X 0 0 0 MARK SKINNER TREASURER 5.00 X X 0 0 0 LORNA WEIR SECRETARY 5.00 X X 0 0 0 KIM ISENBERG DIRECTOR 1.00 X 0 0 0 PAUL LYONS DIRECTOR 1.00 X 0 0 0 SUSAN BERRY MD DIRECTOR 1.00 X 0 0 0 SHAFALI JESTE MD DIRECTOR (UNTIL 12/2025) 1.00 X 0 0 0 PHILIP PEARL MD DIRECTOR (UNTIL 12/2025) 1.00 X 0 0 0 MIKE PORATH DIRECTOR 1.00 X 0 0 0 TOM KELLY DIRECTOR 1.00 X 0 0 0 STEVEN MAH PHD DIRECTOR 1.00 X 0 0 0 ALAN MILLER MD PHD DIRECTOR 1.00 X 0 0 0 SHELDON SCHUSTER PHD DIRECTOR 1.00 X 0 0 0 JIM PALMA DIRECTOR (UNTIL 12/2025) 1.00 X 0 0 0 PETER SALTONSTALL SENIOR ADVISOR & CEO EMERITUS 17.00 X 47303 0 2358 NEETA KOTECHA VP & CFO 35.00 X 186375 0 38387 KELLEEN ESPERIAS CHIEF STRATEGY & OPERATIONS OFFICER 35.00 X 294239 0 29613 EDWARD NEILAN CHIEF MEDICAL & SCIENTIFIC OFFICER 35.00 X 270662 0 60560 PRASHANT GOEL VP INFORMATION TECHNOLOGY 35.00 X 293256 0 15368 TRACEY SIKORA VP OF RESEARCH & CLINICAL PROGRAMS 35.00 X 194233 0 24588 ALEXANDRA MOORE VP OF DEVELOPMENT 35.00 X 254340 0 12713 JILL POLLANDER VP PATIENT SERVICES 35.00 X 187802 0 24142 2208171 0 239817 32 0 1 0 FUTURE DMZ FUTURE LIMO 67-1185 MAMALAHOA HWY D104 KAMUELA HI 96743 GROUND TRANSPORTATION/PATIENT SERVICE 318676 MANATT PHELPS AND PHILLIPS LLP 2049 CENTURY PARK EAST SUITE 1700 LOS ANGELES CA 90067 LEGAL SERVICES 195000 ZUCKERMAN SPAEDER LLP 1800 M STREET NW SUITE 1000 WASHINGTON DC 20036 LEGAL SERVICES 175494 3 1808455 1172580 20963770 23944805 PATIENT ASSISTANCE FEE 624100 3679368 3679368 REGISTRY AND OTHER FEE 624100 2181754 2181754 PROGRAMMATIC EVENTS AN 624100 1682814 1682814 RESEARCH FEES 624100 260291 260291 DRUG, TRAVEL AND LODGI 624100 131090 131090 7935317 2650236 2650236 9308439 9261601 46838 46838 46838 34577196 7935317 0 2697074 106388 106388 21588798 21588798 386704 386704 1110324 564010 315135 231179 8884911 5340759 2066955 1477197 346468 270465 18191 57812 1189929 913325 68826 207778 713016 346350 259322 107344 465611 55297 397864 12450 82022 82022 90000 90000 24389 24389 1310124 962674 61441 286009 658469 117218 445684 95567 458499 183171 234926 40402 77846 48432 1465 27949 1410724 492715 35638 882371 1126877 948247 2296 176334 MISCELLANEOUS 370012 88734 178428 102850 OVERHEAD ALLOCATION 0 273922 -273922 40401111 32777209 3918660 3705242 4343127 4240335 8924597 5720047 11405783 6302307 371002 322083 8047579 6152080 2068982 1895499 44477084 47633554 102597 130704 628568 655768 72321740 66900297 1716009 1457619 675513 527863 527082 423085 827199 859641 3745803 3268208 X 10013533 10464343 58562404 53167746 68575937 63632089 72321740 66900297 -5823915 880067 0 X X 0 1 X 1 1 1 X 36851836 51401122 55591572 40390497 23944805 208179832 36851836 51401122 55591572 40390497 23944805 208179832 138342037 69837795 223148 415150 1751860 2489178 2650236 7529572 215709404 38259040 0.32380 0.35020 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 19730 229201 248931 40152180 40401111 1000000 250000 0 0 1000000 1000000 1000000 1000000 4000000 6000000 154106 145323 263130 248931 811490 250000 250000 250000 250000 1000000 1500000 5779 5450 9867 19730 40826 221500 221500 221500 221500 221500 221500 221500 221500 200000 21500 221500 1.00000 0 0 37726 35918 1808 8009853 6116162 1893691 1895499 DEFERRED COMPENSATION 192920 OPERATING LEASE LIABILITY 666721 859641 X 35474624 880067 41750 921817 34552807 24389 24389 34577196 40418472 41750 41750 40376722 24389 24389 40401111 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, 2025. NORD'S INFORMATION RETURNS ARE SUBJECT TO EXAMINATION BY THE FEDERAL AND STATE JURISDICTIONS. 1 EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM 0 0 GRANTS TO RECIPIENTS 30887 NORTH AMERICA - CANADA AND MEXICO, BUT NOT THE UNITED STATES 0 0 GRANTS TO RECIPIENTS 110689 SOUTH ASIA - AFGHANISTAN, BANGLADESH, BHUTAN, INDIA, MALDIVES, NEPAL, 0 0 GRANTS TO RECIPIENTS 240063 EAST ASIA AND THE PACIFIC - AUSTRALIA, BRUNEI, BURMA, CAMBODIA, 0 0 GRANTS TO RECIPIENTS 2635 MIDDLE EAST AND NORTH AFRICA 0 0 GRANTS TO RECIPIENTS 1362 SOUTH AMERICA 0 0 GRANTS TO RECIPIENTS 1068 0 0 0 0 0 0 386704 0 386704 SOUTH ASIA - AFGHANISTAN, BANGLADESH, BHUTAN, INDIA, MALDIVES, NEPAL, MOBILE DEVELOPMENT 239364 BANK OF AMERICA INTERNATIONAL WIRE 0 FMV NORTH AMERICA SEED GRANT AWARD 21250 BANK OF AMERICA INTERNATIONAL WIRE 0 FMV EUROPE (INCLUDING ICELAND & GREENLAND) AMYLOIDOSIS RESEARCH GRANT AWARD 21000 BANK OF AMERICA INTERNATIONAL WIRE 0 FMV 2 1 CONSULTANT NORTH AMERICA - CANADA AND MEXICO, BUT NOT THE UNITED STATES 1 82148 WIRE FMV TRAVEL REIMBURSEMENT NORTH AMERICA - CANADA AND MEXICO, BUT NOT THE UNITED STATES 6 3249 WIRE FMV TRAVEL REIMBURSEMENT EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIU 3 4215 WIRE FMV TRAVEL REIMBURSEMENT EAST ASIA AND THE PACIFIC - AUSTRALIA, BRUNEI, BURMA, CAMBODIA, 6 2635 WIRE FMV TRAVEL REIMBURSEMENT MIDDLE EAST AND NORTH AFRICA 1 1362 WIRE FMV TRAVEL REIMBURSEMENT SOUTH AMERICA 2 1068 WIRE FMV TRAVEL SCHOLARSHIP SOUTH ASIA 7 699 WIRE FMV 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 REGENTS REGENTS OF THE UNIVERSITY OF CALIFORNIA PO BOX 743315 LOS ANGELES CA 90074 956006143 501C3 25000 0 SEED GRANT AWARD - ACPMP REGENTS OF THE UNIVERSITY OF COLORADO GRANTS AND CONTRACTS MAIL STOP F428 ANSCHUTZ MEDICAL CAMPUS BLDG 500 AURORA CO 80045 846000555 17275 0 BILIARY ARTESIA SEED GRANT AWARD DUKE UNIVERSITY OFFICE OF SPONSORED PROGRAMS PO BOX 602651 CHARLOTTE NC 28260 560532129 501C3 17500 0 AVM RESEARCH AT DUKE UNIVERSITY TRUSTEES OF THE UNIVERSITY OF PENNSYLVANIA 3451 WALNUT STREET 5TH FLOOR FRANKLIN BUILDING PHILADELPHIA PA 19104 231352685 501C3 41807 0 TRUSTEES OF THE UNIVERSITY OF PENNSYLVANIA 3 1 PATIENT ASSISTANCE PROGRAMS 6880 21588798 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 1 0 PAMELA GAVIN CEO 457461 0 22500 0 0 0 17500 0 14588 0 512049 0 0 0 EDWARD NEILAN CHIEF MEDICAL & SCIENTIFIC OFFICER 270662 0 0 0 0 0 14420 0 46140 0 331222 0 0 0 KELLEEN ESPERIAS CHIEF STRATEGY & OPERATIONS OFFICER 294239 0 0 0 0 0 15000 0 14613 0 323852 0 0 0 PRASHANT GOEL VP INFORMATION TECHNOLOGY 293256 0 0 0 0 0 14696 0 672 0 308624 0 0 0 ALEXANDRA MOORE VP OF DEVELOPMENT 234340 0 20000 0 0 0 12713 0 0 0 267053 0 0 0 NEETA KOTECHA VP & CFO 186375 0 0 0 0 0 9647 0 28740 0 224762 0 0 0 TRACEY SIKORA VP OF RESEARCH & CLINICAL PROGRAMS 194233 0 0 0 0 0 10000 0 14588 0 218821 0 0 0 JILL POLLANDER VP PATIENT SERVICES 187802 0 0 0 0 0 9554 0 14588 0 211944 0 0 0 PART I, LINE 7 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.