2020-08-04T10:43:47-05:00 2019-12-31 042571780 AAFCPAS INC 50 WASHINGTON STREET WESTBOROUGH MA 01581 990 2019-01-01 133223946 NATIONAL ORGANIZATION FOR RARE DISORDERS INC NATI 6172497300 1900 CROWN COLONY DR 3RD FL NO QUINCY MA 02169 VINCENT J MURPHY JR VICE PRESIDENT OF FINANCE 6172497300 2020-07-21 1 COURTNEY MCFARLAND CPA P01645518 5083669100 2020-07-06 40.70.31.102 2020-07-21 09:54:01 ED P 87AE54C884FF003181B05E7BF84F4C93A3EEF9A3 67FD54DCEB6CBC14265FA3262D2D1D14C69EA041 2019 2020-11-19 02:30:22Z VINCENT J MURPHY JR 1900 CROWN COLONY DR 3RD FL NO 310 QUINCY MA 02169 52637659 0 X WWW.RAREDISEASES.ORG X 1983 NY NORD STRIVES TO IMPROVE THE LIVES OF THOSE WITH RARE DISEASES THROUGH ASSISTANCE PROGRAMS, EDUCATION, ADVOCACY AND RESEARCH. 15 14 91 492 0 0 42070943 43644020 5024265 8392510 145033 595629 -117142 -218782 47123099 52413377 25639741 31348036 0 0 5580030 6630675 0 0 1484799 2855047 3810983 34074818 41789694 13048281 10623683 50838028 61751096 2127388 2331773 48710640 59419323 X NORD LEADS THE FIGHT TO IMPROVE THE LIVES OF PEOPLE AFFECTED BY RARE DISEASES THROUGH EDUCATION, PATIENT ASSISTANCE PROGRAMS, ADVOCACY, AND BY PROMOTING RESEARCH. 0 0 32683732 30812906 5758863 PATIENT ASSISTANCE PROGRAMS PROVIDE FINANCIAL ASSISTANCE TO HELP ELIGIBLE PATIENTS ACCESS LIFESAVING THERAPIES AND SERVICES PRESCRIBED BY THEIR PHYSICIANS. IN 2019 NORD PROVIDED FINANCIAL ASSISTANCE TO 8,612 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 2019, THERE WERE 381 PATIENTS THAT NORD ASSISTED AS PART OF THAT SPECIAL CLINICAL TRIAL TRAVEL ASSISTANCE PROGRAM. 1208255 111541 NORD EDUCATIONAL INITIATIVES STRIVE TO EMPOWER PATIENTS AND THEIR FAMILIES, INFORM STUDENTS OF ALL AGES, AND SUPPORT THE VITALLY IMPORTANT WORK OF PHYSICIANS AND OTHER HEALTHCARE PROFESSIONALS IN CREATING A BETTER UNDERSTANDING OF RARE DISEASES. THIS IS DONE THROUGH THE DEVELOPMENT OF NORD'S RARE DISEASE DATABASE, EDUCATIONAL WEBINARS AND VIDEOS, AND ROBUST EDUCATIONAL PROGRAMMING THROUGH NORD'S CME PARTNERSHIPS AND AT NORD'S RARE DISEASES AND ORPHAN PRODUCTS BREAKTHROUGH SUMMIT (RARE SUMMIT). IN 2019 OVER 800 PEOPLE ATTENDED NORD'S RARE SUMMIT WHERE KEY STAKEHOLDER IN THE RARE DISEASE SPACE GATHER TO LEARN, CONNECT, AND CREATE POSITIVE CHANGE FOR THE BROADER RARE DISEASE COMMUNITY. ALSO, IN 2019 THERE WERE OVER 12.5 MILLION VISITORS TO THE ORGANIZATION'S WEBSITE TO READ NORD'S RARE DISEASE REPORTS WHICH OFFER INFORMATION ABOUT EACH RARE DISEASE IN EASY TO UNDERSTAND LANGUAGE. 1553178 535130 105187 IN 2019, NORD HAS CONTINUED TO DEVELOP ITS NATUARL HISTORY/REGISTRYPLATFORM TO HELP RESEARCHERS BETTER UNDERSTAND THE PATIENT EXPERIENCEAND PROMOTE DEVELOPMENT OF INNOVATIVE, SAFE AND EFFECTIVE THERAPIES. ASOF DECEMBER 31, 2019, THERE WERE 10,238 PARTICIPANTS ACROSS 30DIESASE-SPECIFIC DATABASES AS PART OF NORD'S REGISTRY PROGRAM.IN ADDITION, NORD AWARDED 10 GRANTS IN 2019 TO SUPPORT RESEARCH OF RARE DISEASES. THESE GRANTS ARE FUNDED BY CONTRIBUTIONS FROM THE PUBLIC, PATIENTS AND THEIR FAMILIES, AND PATEINT ORGANIZATIONS. 1142479 2413919 NORD'S ADVOCACY EFFORTS ARE FOCUSED ON SERVING AS A LIASON BETWEEN THERARE DISEASE COMMUNITY AND THE VARIOUS ORGANIZATIONS AND INSTITUTIONSTHAT HAVE A DIRECT IMPACT ON THE LIVES OF THE 30 MILLION AMERICANSLIVING WITH RARE DISEASES. NORD ENGAGES ALL TYPES OF ORGANIZATIONS,INCLUDING STATE AND FEDERAL AGENCIES AND LEGISLATORS, OTHER NON-PROFITORGANIZATIONS, AND FOR-PROFIT ORGANIZATIONS TO HELP RAISE AWARENESSAROUND THE NEEDS OF RARE DISEASE PATIENTS AND TO COLLECTIVELYCONTRIBUTE TO REALIZING SOLUTIONS POSITIVELY IMPACT OUR DIVERSECOMMUNITY. 789154 3000 MEMBERSHIP: NORD WAS FOUNDED ON THE PRINCIPLES OF COLLABORATION AND A UNITED VOICE, AND WE PROVIDE GUIDANCE AND SUPPORT AT ALL PHASES OF DEVELOPMENT, AS ORGANIZATIONS EVOLVE. NORD OFFERS ITS MEMBERS EDUCATIONAL WEBINARS AND REGIONAL MEMBERSHIP MEETINGS PROVIDE OPPORTUNITIES TO INTERACT WITH OTHER LEADERSHIP OF OTHER PATIENT ORGANIZATIONS AND TO BUILD CAPACITY BY ADOPTING BEST PRACTICES. AS OF DECEMBER 31, 2019 THERE WERE 296 PATIENT ORGANIZATIONS THAT WERE MEMBERS. 1931633 2416919 37376798 1 1 0 1 0 0 0 0 0 0 1 0 0 0 1 1 1 0 0 0 0 1 0 0 1 0 0 1 1 1 0 0 0 0 0 0 0 0 1 0 0 0 0 0 0 0 0 1 27 0 1 91 1 0 0 0 0 0 1 1 0 0 0 0 0 0 X 15 14 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 VINCENT MURPHY 6172497300 1900 CROWN COLONY DRIVE 3RD FLOOR QUINCY MA 02169 SHELDON M SCHUSTER PHD VICE CHAIRMAN 2.00 X X 0 0 0 STEVEN GROSSMAN SECRETARY 8.00 X X 0 0 0 MARSHALL L SUMMAR MD CHAIRMAN 10.00 X X 0 0 0 FREDERICK BARR MD DIRECTOR 1.00 X 0 0 0 RONALD J BARTEK DIRECTOR 5.00 X 0 0 0 SUSAN HEDSTROM DIRECTOR 2.00 X 0 0 0 VICKI MCCARRELL DIRECTOR 4.00 X 0 0 0 JIM PALMA DIRECTOR 3.00 X 0 0 0 PETER SALTONSTALL PRESIDENT/CEO 35.00 X X 399286 0 24836 SUSAN BERRY DIRECTOR 2.00 X 0 0 0 KAY HOLCOMBE DIRECTOR 2.00 X 0 0 0 NEIL HORIKOSHI DIRECTOR 2.00 X 0 0 0 SHAFALI JESTE DIRECTOR 1.00 X 0 0 0 PHILIP PEARL DIRECTOR 2.00 X 0 0 0 MIKE PORATH DIRECTOR 2.00 X 0 0 0 PAMELA GAVIN CHIEF OPERATING OFFICER 35.00 X 314643 0 22121 VINCENT J MURPHY JR VP FINANCE 35.00 X 122652 0 29570 TIM EHRHARD DIRECTOR OF IT 35.00 X 157641 0 31257 ALEXA MOORE VP OF DEVELOPMENT 35.00 X 204227 0 32940 JILL POLLANDER DIRECTOR OF PATIENT SERVICES 35.00 X 123058 0 21704 RACHEL SHER VP POLICY & REGULATORY AFFAIRS 35.00 X 193229 0 8982 JAMES BERG PRINCIPAL SOFTWARE ARCHITECT 35.00 X 121494 0 37063 1636230 0 208473 15 0 1 0 CLOUD FOR GOOD LLC 1854A HENDERSONVILLE RD 252 ASHEVILLE NC 28803 IT CONSULTANT 136111 1 1665303 41978717 118421 43644020 PATIENT ASSISTANCE FEE 624100 5008574 5008574 PROGRAMMATIC EVENTS AN 624100 2399519 2399519 RESEARCH FEES 624100 576127 576127 REGISTRY, WEB SUBSCRIP 624100 234128 234128 DRUG, TRAVEL AND LODGI 624100 174162 174162 8392510 595629 595629 5500 224282 -218782 -218782 52413377 8392510 0 376847 535130 535130 30812906 30812906 947732 370709 296611 280412 4621791 2424728 1584541 612522 227791 132588 64508 30695 450852 335388 46464 69000 382509 178533 142915 61061 210828 97984 102275 10569 54342 54342 390592 254629 85854 50109 328595 81781 163025 83789 538733 284649 173268 80816 210806 205780 5026 1154423 917053 137251 100119 545820 509778 21811 14231 MISCELLANEOUS 376844 235162 50206 91476 41789694 37376798 2928097 1484799 38371222 2468342 7705613 45239712 2687602 11775250 316998 353136 4260301 2772540 1625587 1487761 136831 107063 189191 23943 100873 50838028 61751096 595138 921186 474078 746474 585652 223059 368468 304223 104052 136831 2127388 2331773 X 3289240 5041320 45421400 54378003 48710640 59419323 50838028 61751096 10623683 85000 0 X X 0 1 X 1 0 X 20322996 37862150 48281104 42070943 45370270 193907463 20322996 37862150 48281104 42070943 45370270 193907463 115887981 78019482 157483 418492 21741 145033 595629 1338378 195245841 21498279 0.39960 0.44310 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 12666 325095 337761 41451933 41789694 1000000 250000 0 0 1000000 1000000 1500000 337761 337761 250000 250000 375000 12666 12666 505203 505203 857182 536110 321072 31731 22144 9587 2866185 2214286 651899 1487761 DEFERRED COMPENSATION 136831 136831 X 52722659 85000 224282 309282 52413377 0 52413377 42098976 85000 224282 309282 41789694 0 41789694 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, 2019. NORD'S INFORMATION RETURNS ARE SUBJECT TO EXAMINATION BY THE FEDERAL AND STATE JURISDICTIONS. PART XI, LINE 2D - OTHER ADJUSTMENTS: FUNDRAISING EXPENSES 224,282. PART XII, LINE 2D - OTHER ADJUSTMENTS: FUNDRAISING EXPENSES 224,282. 0 0 0 0 0 0 0 0 0 0 NORTH AMERICA RESEARCH GRANT 25000 BOOK EUROPE (INCLUDING ICELAND & GREENLAND) RESEARCH GRANT 15000 BOOK 2 0 0 0 0 0 0 0 PART III ACCOUNTING METHOD: ANNUAL GALA 5500 5500 19375 104429 25500 74978 5500 5500 19375 104429 25500 74978 224282 -218782 1 BAYLOR COLLEGE OF MEDICINE 1 BAYLOR PLAZA HOUSTON TX 77030 741613878 25000 BOOK RESEARCH GRANT. FOX CHASE CANCER CENTER 333 COTTMAN AVENUE PHILADELPHIA PA 19111 232003072 15000 BOOK RESEARCH GRANT. JOHNS HOPKINS UNIVERSITY 3901 KESWICK ROAD SUITE N4327B BALTIMORE MD 21211 831496989 55000 BOOK RESEARCH GRANT. UNIVERSITY OF FLORIDA 3410 PALM BEACH BLVD FT MYERS FL 33916 453450561 14733 BOOK RESEARCH GRANT. WAKE FOREST UNIVERSITY HEALTH SCIENCES MEDICAL CENTER BLVD WINSTONSALEM NC 27157 223849199 25000 BOOK RESEARCH GRANT. DUKE UNIVERSITY 316 TEER BUILDING BOX 90271 DURHAM NC 27708 560532129 25000 BOOK RESEARCH GRANT. UNIVERSITY OF PITTSBURGH 3959 FIFTH AVENUE PITTSBURG PA 15213 250965591 22500 BOOK RESEARCH GRANT. BRIGHAM & WOMENS HOSPITAL 399 REVOLUTION DRIVE NO 645 SOMERVILLE MA 02145 042312909 25000 BOOK RESEARCH GRANT. UNIVERSITY OF NEBRASKA - LINCOLN 1400 R STREET ROOM 200NU LINCOLN NE 68588 263670790 15500 BOOK RESEARCH GRANT. RESEARCH GRANT. 9 0 PATIENT ASSISTANCE PROGRAMS 8231 30812906 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 399286 0 0 0 0 0 14000 0 10836 0 424122 0 0 0 PAMELA GAVIN CHIEF OPERATING OFFICER 314643 0 0 0 0 0 14000 0 8121 0 336764 0 0 0 VINCENT J MURPHY JR VP FINANCE 122652 0 0 0 0 0 6623 0 22947 0 152222 0 0 0 TIM EHRHARD DIRECTOR OF IT 157641 0 0 0 0 0 8240 0 23017 0 188898 0 0 0 ALEXA MOORE VP OF DEVELOPMENT 204227 0 0 0 0 0 10537 0 22403 0 237167 0 0 0 RACHEL SHER VP POLICY & REGULATORY AFFAIRS 193229 0 0 0 0 0 7710 0 1272 0 202211 0 0 0 JAMES BERG PRINCIPAL SOFTWARE ARCHITECT 121494 0 0 0 0 0 6430 0 30633 0 158557 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. X 4 118421 FAIR VALUE 0 0 0 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.