NATIONAL ORGANIZATION FOR RARE DISORDERS INC

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.

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.