THE ALEXION CHARITABLE FOUNDATION INC

THE GRANT WILL SUPPORT THE PROJECT TITLED CARE FOR CAREGIVERS: CARECONNECT: STRENGTHENING PEER & CLINICAL MENTAL HEALTH SUPPORT FOR RARE DISEASE CAREGIVERS PROGRAM WHICH AIMS TO STRENGTHEN THE CONTINUUM OF MENTAL HEALTH SUPPORT FOR CAREGIVERS WITHIN RARE DISEASE COMMUNITIES BY EXPANDING BOTH NONCLINICAL AND CLINICAL RESOURCES. THROUGH PARTNERSHIPS WITH RARE-SERVING ORGANIZATIONS, WE WILL ENHANCE CAREGIVER SUPPORT SYSTEMS WHILE DELIVERING SPECIALIZED TRAINING TO MENTAL HEALTH PROFESSIONALS TO ADDRESS THE COMPLEX EMOTIONAL AND PSYCHOLOGICAL CHALLENGES CAREGIVERS FACE. ADDITIONALLY, CRISIS SUPPORT PROTOCOLS WILL BE ESTABLISHED TO ENSURE SWIFT, EFFECTIVE INTERVENTIONS DURING EMERGENCIES, FOSTERING LONG-TERM RECOVERY AND RESILIENCE.

THE GRANT WILL SUPPORT THE PALS MISSION OF HELPING PEOPLE WITH TRANSPORTATION NEEDS FOR PEOPLE AFFECTED BY RARE DISEASES. PALS ARRANGES FREE AIR TRANSPORTATION FOR INDIVIDUALS LIVING WITH OR AFFECTED BY RARE DISEASE TO ACCESS OUT-OF-TOWN MEDICAL DIAGNOSIS, TREATMENT, AND FOLLOW-UP, AS WELL AS TO ATTEND RARE DISEASE CONFERENCES AND SOCIAL/EDUCATION EVENTS THROUGHOUT THE US. THE GRANT WILL FUND THE PROVISION OF ROUGHLY 450+ FLIGHTS NATIONALLY FOR RARE DISEASE PATIENTS, CAREGIVERS, AND FAMILIES (INCLUDING GROUND TRANSPORTATION BETWEEN THE AIRPORT AND TREATMENT DESTINATION), AS WELL AS OUTREACH TO PROMOTE THE AVAILABILITY OF THESE SERVICES TO THE RARE DISEASE COMMUNITY.

THE GRANT WILL SUPPORT THE PROJECT TITLED ABC HEALTH MATTERS: MANAGING RARE DISEASES AND CHRONIC HEALTH ISSUES FOR THE FOLLOWING PURPOSE: ABC HEALTH MATTERS IS AN INTRODUCTORY HEALTH LITERACY PROGRAM THAT EMPOWERS CANADIANS TO MANAGE THEIR HEALTH MORE EFFECTIVELY BY INCREASING THEIR CONFIDENCE WHEN TALKING ABOUT AND MAKING DECISIONS REGARDING HEALTH ISSUES WITH FAMILY, FRIENDS, AND HEALTH PROFESSIONALS. ABC SEEKS TO DEVELOP A NEW STREAM OF THE ABC HEALTH MATTERS PROGRAM DESIGNED TO MEET THE NEEDS OF FAMILIES IMPACTED BY RARE DISEASES AND CHRONIC HEALTH ISSUES. THE PROGRAM WILL INCLUDE TWO NEW TARGETED WORKBOOKS, COURSES ON THEIR CUSTOM LEARNING PLATFORM (THE ABC SKILLS HUB), OUTREACH TO COMMUNITY ORGANIZATIONS AND HEALTH CARE PROFESSIONALS, A DEDICATED PROGRAM LANDING PAGE, AND COMMUNICATIONS AND PROMOTIONAL ACTIVITIES TO RAISE AWARENESS ABOUT PROGRAM OFFERINGS.

ONGOING GRANT IN SUPPORT OF ANGEL FLIGHT NES MISSION/FLIGHT COORDINATION: HEALING JOURNEYS FOR RARE DISEASES PROGRAM WILL ALLOW THEM TO CONTINUE THEIR SUPPORT OF PATIENT AND OUTREACH ACTIVITIES, ENABLING MORE PATIENTS AND FAMILIES TO RECEIVE SUPPORT IN ACCESSING AERIAL TRANSPORTATION FOR MEDICAL TREATMENTS NOT AVAIALABLE IN THEIR GEOGRAPHICAL AREAS. PARTICIPATING IN EXPANDED MARKETING TO VARIOUS RARE/ULTRA-RARE GROUPS TO PARTNER AND EDUCATE THEM ON ANGEL FLIGHT NES FREE AIR TRANSPORTATION SERVICES IS PIVOTAL TO CONTINUED GROWTH.

THE GRANT WILL SUPPORT THE PROJECT TITLED RAINBOW/KASA PROGRAM WHICH IS BOSTON CHILDREN'S HOSPITAL'S PRIMARY-CARE MEDICAL HOME FOR HIGHLY COMPLEX CHILDREN, OVER 50% OF WHOM HAVE RARE DISEASES. THE DEMAND FOR THE RAINBOW/KASA PROGRAM HAS GROWN SUBSTANTIALLY IN RECENT YEARS DUE TO HIGH QUALITY CARE COORDINATION SERVICES AND ABILITY TO MANAGE A POPULATION THAT OTHER MEDICAL HOMES CANNOT. THIS INITIATIVE - IMPROVING ACCESS TO COMPLEX PRIMARY CARE SERVICES - WILL ALLOW TO ENSURE MAXIMAL ACCESS FOR NEW PATIENTS TO THE PROGRAM, ENSURING THAT NEW PATIENTS CAN BE SEEN QUICKLY AND APPROPRIATELY WITH FULL SOCIAL AND MEDICAL ASSESSMENTS AND CONNECTION TO HOME AND HOSPITAL-BASED MEDICAL SUPPORTS. IN ADDITION, THIS INITIATIVE WILL ALLOW TO INCREASE OUR URGENT CARE SERVICES FOR RAINBOW/KASA PATIENTS, ENSURING THAT MORE PATIENTS CAN BE SEEN EACH DAY BY PROVIDERS EXPERT IN COMPLEX CARE.