THE ALEXION CHARITABLE FOUNDATION INC

THE GRANT WILL SUPPORT THE PROJECT TITLED MISSION/FLIGHT COORDINATION: HEALING JOURNEYS FOR PATIENTS BATTLING RARE DISEASES TO COORDINATE FREE AIR AND GROUND TRANSPORTATION SO PATIENTS CAN ACCESS SPECIALIZED MEDICAL CARE AND TREATMENT OUTSIDE OF THEIR GEOGRAPHIC AREA TO TREAT AND BATTLE ILLNESSES AND OTHER HEALTH AFFLICTIONS INCLUDING RARE AND ULTRA-RARE DISEASES THAT COULD BE LIFE THREATENING IF THE PATIENT DOES NOT RECEIVE THE SPECIALIZED CARE THAT THEY NEED. WITH THE CONSOLIDATION OF HEALTHCARE ENTITIES, WE ARE HAVING MORE AND MORE PATIENTS TURN TO US FOR HELP TO ACCESS SPECIALIZED CARE AND TREATMENT THAT IS NOT AVAILABLE TO THEM IN THEIR GEOGRAPHIC AREA. WE PROVIDE OUR SERVICES FOR AS LONG AND AS OFTEN AS A PATIENT NEEDS OUR HELP. SINCE 1996, WE HAVE SCHEDULED OVER 108,000 PATIENT/PASSENGER MISSIONS WHO HAVE TRAVELED MORE THAN 16 MILLION TO MORE THAN 750 MEDICAL FACILITIES. DISTANCE SHOULD NEVER BE AN OBSTACLE FOR PATIENTS TO ACCESS THE MEDICAL CARE THEY NEED AND DESERVE.

THE GRANT WILL SUPPORT THE PROJECT TITLED BRIDGING BARRIERS TO CARE: EXPANDING SPECIALIST SUPPORT FOR CHILDREN WITH RARE AND COMPLEX MEDICAL CONDITIONS IN THE UK FOR THE FOLLOWING PURPOSE ENHANCE THE DIAGNOSTIC JOURNEY AND ACCESS TO SPECIALISED CARE FOR CHILDREN LIVING WITH RARE AND COMPLEX MEDICAL CONDITIONS. THE SUPPORT WILL ENABLE THE DEPLOYMENT OF A NEW COHORT OF ROALD DAHL NURSE SPECIALISTS WHO FOCUS ON CHILDREN WITH MEDICAL COMPLEXITIES (CMC) OVER A 12-MONTH PERIOD, ENSURING THAT CHILDREN WITH CMC AND THOSE LIVING WITH RARE DISEASES RECEIVE EXPERT, COORDINATED CARE TAILORED TO THEIR UNIQUE NEEDS. THE PROGRAM WILL OFFER PROFESSIONAL DEVELOPMENT OPPORTUNITIES FOR EXISTING ROALD DAHL NURSES, EQUIPPING THEM WITH ADVANCED SKILLS TO MANAGE THE COMPLEXITIES OF RARE DISEASES AND ALSO SUPPORT THE DELIVERY OF EDUCATIONAL AND SKILL-BUILDING WORKSHOPS, ALONGSIDE THE DISTRIBUTION OF ESSENTIAL RESOURCES TO FAMILIES.

THE GRANT WILL SUPPORT THE PROJECT TITLED IMPROVING TIMELY ACCESS TO CARE FOR INFANTS WITH OUT-OF-RANGE GENETIC NEWBORN SCREENING (NBS) AIMS TO IMPLEMENT AND EVALUATE A COMPREHENSIVE EDUCATIONAL AND SOCIAL SUPPORT INTERVENTION FOR FAMILIES WHO RECEIVE NOTIFICATIONS OF OUT-OF-RANGE GENETIC NEWBORN SCREENING (NBS) RESULTS. THE NETWORK'S NBS REGISTERED NURSES (NBS RNS) WILL EDUCATE AND SUPPORT FAMILIES, CONDUCT AN ELECTRONIC SOCIAL DETERMINANTS HEALTH (SDOH) ASSESSMENT, PROVIDE FAMILIES WITH THE OPTION TO BE CONNECTED TO A PERSONALIZED ELECTRONIC HEALTH PORTAL (MYCHART), AND HAVE A TELEHEALTH VISIT WITH AN NBS GENETIC COUNSELOR IF INDICATED. THIS INITIATIVE AIMS TO ENHANCE TIMELY ACCESS TO CARE BY ADDRESSING BARRIERS FACED BY THIS VULNERABLE POPULATION.

THE GRANT WILL SUPPORT THE PROJECT TITLED SPECIAL DAY SERVICES FOR YOUNG ADULTS LIVING WITH RARE DISEASES AND RARE CANCERS ACROSS THE UK IN 2025 FOR THE FOLLOWING PURPOSE: THE PROJECT IS DEDICATED TO GIVE YOUNG ADULTS LIVING WITH RARE DISEASES AND RARE CANCERS, AND THEIR CAREGIVERS/FAMILY MUCH-NEEDED TIME OUT FROM THE REALITY OF LIVING WITH A RARE DISEASE. WE DO THIS BY PROVIDING ENJOYABLE AND INCLUSIVE MEMORY-MAKING EXPERIENCES WHICH GIVE HOPE, PROMOTE RESILIENCE AND ENHANCE COPING STRATEGIES. OUR DISEASE AGNOSTIC APPROACH MEANS WE AIM TO REACH YOUNG ADULTS WITH AS WIDE A RANGE OF DISEASES AS POSSIBLE BY PROMOTING OUR SERVICES ACROSS MEDICAL SETTINGS AND PATIENT ADVOCACY GROUPS ACROSS THE UK.

THE GRANT WILL SUPPORT THE PROJECT TITLED IDENTIFYING, REACHING AND SUPPORTING CAREGIVERS OF RARE DISEASE PATIENTS IN DIVERSE AND UNDERSERVED PATIENT POPULATIONS FOR THE FOLLOWING PURPOSE LEADING A DIRECT-TO-CAREGIVER INITIATIVE AIMED AT EXPANDING ACCESS TO GENETIC TESTING AND REDUCING THE TIME TO DIAGNOSIS FOR PATIENTS WITH RARE CONDITIONS. CAN'S APPROACH EMPHASIZES THE CRUCIAL ROLE OF CAREGIVERS IN THE DIAGNOSTIC PROCESS AND TARGETS ZIP CODES WITH KNOWN HEALTHCARE DISPARITIES TO REACH DIVERSE AND UNDERSERVED POPULATIONS. THEY PARTNER WITH 600+ PATIENT ADVOCACY GROUPS (PAGS) TO EMPOWER PATIENTS AND CAREGIVERS. BY ENABLING THEM TO EASILY SHARE THEIR DIAGNOSTIC JOURNEYS THROUGH AN ONLINE CHATBOT, CAN AIMS TO SIMPLIFY THE NAVIGATION OF THE TESTING PROCESS.