NATIONAL ORGANIZATION FOR RARE DISORDERS INC
Programs
NORD Patient Assistance Programs
NORD PATIENT ASSISTANCE PROGRAMS PROVIDE ELIGIBLE INDIVIDUALS WITH THE FINANCIAL ASSISTANCE FOR THE GREATEST BREADTH OF CARE AND TREATMENT NEEDS TO MANAGE THEIR RARE DIAGNOSES. OUR DISEASE-STATE SPECIFIC PROGRAMS TAKE INTO CONSIDERATION THE NUANCES OF INDIVIDUAL DISEASE AND THE UNIQUE NEEDS OF THE PATIENT POPULATION. THIS INCLUDES ASSISTANCE WITH HEALTH INSURANCE PREMIUMS, COPAYMENTS, AND COINSURANCE AS WELL AS CERTAIN OUT-OF-POCKET EXPENSES. OUR APPROACH ENSURES THAT ELIGIBLE INDIVIDUALS WHO HAVE HEALTH INSURANCE (COMMERCIAL AND/OR PUBLIC INSURANCE), AS WELL AS INDIVIDUALS WHO ARE UNINSURED OR UNDERINSURED, RECEIVE THE FINANCIAL ASSISTANCE NECESSARY TO ACCESS THE CARE AND TREATMENT PRESCRIBED BY THEIR HEALTH CARE PROVIDER(S). IN 2024, NORD PATIENT ASSISTANCE PROGRAMS PROVIDED FINANCIAL ASSISTANCE TO A TOTAL OF 6,268 INDIVIDUALS. THIS INCLUDED 6,024 ASSISTED THROUGH OUR PAP PROGRAMS AND CLINICAL TRIAL TRAVEL AND LODGING SUPPORT FOR 244 INDIVIDUALS IN 2024.GeographiesNot indicatedDatesJan 1, 2024 – Dec 31, 2024Source990No causes providedNo populations provided–$27.8MNORD Educational Initiatives
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 2024, 794 PEOPLE ATTENDED THE NORD SUMMIT IN PERSON, AND 64 PEOPLE REGISTERED FOR VIRTUAL STREAMING OF THE MEETING. ALSO, IN 2024, THERE WERE OVER 15 MILLION VISITORS TO NORD'S RARE DISEASE DATABASE.GeographiesNot indicatedDatesJan 1, 2024 – Dec 31, 2024Source990No causes providedNo populations provided–$2.1MIAMRARE Natural History/Registry Program
IN 2024, NORD CONTINUED TO DEVELOP THE IAMRARE NATURAL HISTORY/REGISTRY PLATFORM AND PROGRAM TO HELP RESEARCHERS BETTER UNDERSTAND THE PATIENT EXPERIENCE AND PROMOTE THE DEVELOPMENT OF INNOVATIVE, SAFE, AND EFFECTIVE THERAPIES. NEW IAMRARE PLATFORM FEATURES ADDED THIS YEAR INCLUDED ENHANCEMENTS TO THE USER EXPERIENCE AND SUPPORT FOR ADDITIONAL LANGUAGES (SPANISH AND FRENCH). AS OF 12-31-2024, THERE WERE 17,591 CONSENTED PARTICIPANTS ACROSS 44 REGISTRIES REPRESENTING MORE THAN 140 RARE DISEASES. IN ADDITION, AS OF 12-31-2024, THE RESEARCH TEAM WAS SUPPORTING THE DEVELOPMENT OF 30 NEW RARE DISEASE REGISTRIES.GeographiesNot indicatedDatesJan 1, 2024 – Dec 31, 2024Source990No causes providedNo populations provided–$3.3M
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