Alexion Charitable Foundation

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 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 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.

THE GRANT WILL SUPPORT THE PROJECT TITLED THE FIRST GIFT OF ITS KIND | MAKE-A-WISH CANADAS RARE AND GENETIC DISEASE FUND FOR THE FOLLOWING PURPOSE: TO GRANT BETWEEN 250 TO 300 WISHES TO CHILDREN WITH RARE AND GENETIC DISEASES THIS YEAR, A SHOCKING 70% INCREASE FROM LAST YEAR.

THE GRANT WILL SUPPORT THE PROJECT TITLED ABC HEALTH MATTERS: MANAGING RARE DISEASES AND CHRONIC HEALTH ISSUES WHICH 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. RENEWED SUPPORT FROM THE ALEXION CHARITABLE FOUNDATION WOULD ALLOW US TO ADD ADDITIONAL RESOURCES TO THE NEW STREAM OF THE ABC HEALTH MATTERS PROGRAM WHICH WAS DESIGNED TO MEET THE NEEDS OF FAMILIES IMPACTED BY RARE DISEASES AND CHRONIC HEALTH ISSUES. THE PROGRAM WILL INCLUDE ONE NEW TARGETED WORKBOOK, WORKSHOPS, OUTREACH TO COMMUNITY ORGANIZATIONS AND HEALTH CARE PROFESSIONALS, A DEDICATED PROGRAM LANDING PAGE, AND COMMUNICATIONS AND PROMOTIONAL ACTIVITIES TO RAISE AWARENESS ABOUT PROGRAM OFFERINGS, WITH SPECIAL ATTENTION DURING OCTOBER'S HEALTH LITERACY MONTH.

THE GRANT WILL SUPPORT THE PROJECT TITLED MENTAL HEALTH & MENTAL WELLNESS PROGRAMMING AT SERIOUSFUN CAMPS TO ADDRESS AND SUPPORT THE MENTAL HEALTH NEEDS ACROSS OUR GLOBAL NETWORK OF CAMPS, SPECIFICALLY OUR RARE DISEASE CAMPER COMMUNITY. GRANT FUNDING WILL CONTINUE TO FOCUS ON MENTAL HEALTH INTERVENTIONS FOR CAMPER AND FAMILY PROGRAMMING, MENTAL HEALTH PROFESSIONAL POSITIONS AT CAMP, AND MENTAL HEALTH TRAININGS AND CERTIFICATIONS FOR CAMP STAFF.

THE GRANT WILL SUPPORT THE PROJECT TITLED ANTICIPATORY GUIDANCE IN MULTIPLE LANGUAGES FOR FAMILIES OF CHILDREN WITH SEVERE NEUROLOGICAL IMPAIRMENT VIA CPN'S DIGITAL TOOL. NEUROJOURNEY IS AN EDUCATIONAL RESOURCE FOR FAMILIES AND CLINICIANS NAVIGATING THE EVER-EVOLVING NEEDS OF A CHILD WITH SEVERE NEUROLOGICAL IMPAIRMENT (SNI). IT EXPLORES THE INTERCONNECTED MEDICAL COMPLICATIONS COMMON IN PEDIATRIC NEURO-DEGENERATIVE RARE DISEASES. DESIGNED AS AN ANTICIPATORY GUIDANCE TOOL FOR PARENTS, THE CONTENT IS ORGANIZED IN PHASES AS THEY MIGHT OCCUR IN THE ILLNESS JOURNEY. THE RESOURCE ALSO INCLUDES PERSPECTIVES ON THE SOCIAL AND EMOTIONAL EXPERIENCES OF FAMILIES AS THEY CARE FOR THEIR CHILD, ALL ROOTED IN THE PRINCIPLES OF PALLIATIVE CARE. NEUROJOURNEY IS AVAILABLE IN BOTH WRITTEN AND AUDIO FORMATS IN ENGLISH, SPANISH AND FRENCH. WITH THIS FUNDING, NEUROJOURNEY IS ALSO AVAILABLE FOR AFFECTED FAMILIES SPEAKING PORTUGUESE, ARABIC OR CHINESE SOON.

THE GRANT WILL SUPPORT THE PROJECT TITLED IHOPE FOR WHICH AIMS TO REVOLUTIONIZE BRIDGING THE GENETIC MEDICINE GAP AND PROVIDE NEXT-GENERATION CARE TO THOSE WHO NEED IT MOST. USING ADVANCED GENOMIC SEQUENCING TECHNOLOGY AND WORKING WITH LOCAL HEALTHCARE PROVIDERS, GENETIC ALLIANCE CAN DIAGNOSE GENETIC CONDITIONS EARLY AND ACCURATELY. THE PRIMARY GOAL IS TO PROVIDE PRECISION GENETIC DIAGNOSES TO CHILDREN WITH PREVIOUSLY UNDIAGNOSED CONDITIONS, ENABLING TARGETED TREATMENTS THAT IMPROVE QUALITY OF LIFE, REDUCE SUFFERING, AND INCREASE SURVIVAL RATES. ESTABLISHING A FRAMEWORK FOR GENETIC HEALTH SERVICES IN UNDER-RESOURCED AREAS WILL ENSURE LONG-TERM SUSTAINABILITY WITHIN LOCAL HEALTHCARE SYSTEMS.

SUPPORT THE PROJECT TITLED RAREGIVERS GLOBAL MENTAL HEALTH & EMOTIONAL WELLBEING INITIATIVE: GUIDING CAREGIVERS AND PATIENTS THROUGH THE EMOTIONAL JOURNEYS IN RARE, CHRONIC & COMPLEX DISEASE FOR THE PURPOSE OF SUBSIDIZED FEES FOR RAREGIVERS WELLNESS RETREATS, FREE SUPPORT GROUPS AND PUBLIC WEBINARS, ENSURING INCLUSIVITY AND GLOBAL REACH. RAREGIVERS RETREATS, WEBINARS AND SUPPORT GROUPS ARE DESIGNED TO CREATE A SUPPORTIVE COMMUNITY, FOSTERING RESILIENCE AND EMPOWERMENT AMONG RARE DISEASE CAREGIVERS.

THE GRANT WILL SUPPORT THE PROJECT TITLED A NEW HOPE | WELLBEING IN RARE FOR THAT AIMS TO CREATE A MENTAL HEALTH AND EDUCATION PROGRAM TO SUPPORT TEENAGERS AND YOUNG ADULTS WHO ARE POTENTIAL CAREGIVERS AND FUTURE PATIENTS IN THE RARE AUTOSOMAL DOMINANT DISEASE SPACE. PARTICIPANTS WILL HAVE ACCESS TO GENETIC TESTING AND COUNSELING SERVICES, MONTHLY CHECK-INS WITH A SOCIAL WORKER, AND MULTIPLE FORMS OF EDUCATION AND PEER ENGAGEMENT, INCLUDING SOCIAL MEDIA CONTENT, WEBINARS, AND PEER SUPPORT GROUPS. THIS WILL PROVIDE ESSENTIAL SUPPORT AND PREPARE PARTICIPANTS TO MAKE DECISIONS ABOUT THEIR FUTURE CAREER, PERSONAL HEALTH, FAMILY PLANNING, AND CARE NEEDS.

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 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.

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 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.

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 CHARITABLE PURPOSE OF THE GRANT IS TO SUPPORT THE CAMPAIGN FOR THE CHILDREN'S INN AT NIH, A CAPITAL CAMPAIGN TO TRANSFORM ITS RESIDENTIAL FACILITY INTO A STATE-OF-THE-ART ENVIRONMENT TO SERVE MORE YOUNG PEOPLE AND THEIR FAMILIES, KEEP PACE WITH THE NIH'S GROWTH AND DISCOVERY, AND MEET THE CHANGING NEEDS OF RESIDENTS AND PEDIATRIC MEDICAL RESEARCH.

THE GRANT WILL SUPPORT THE PROJECT TITLED RARE DISEASE SUPPORT INITIATIVE FOR THE PURPOSE ENHANCING ACCESS TO CARE FOR HISPANIC FAMILIES AFFECTED BY RARE DISEASES BY ADDRESSING CRITICAL BARRIERS SUCH AS MOBILITY, LANGUAGE, AND FINANCIAL CONSTRAINTS. THE PROGRAM WILL PROVIDE ESSENTIAL RESOURCES, INCLUDING TRAVEL ASSISTANCE, EDUCATIONAL INITIATIVES, AND CULTURALLY COMPETENT SUPPORT SERVICES, ENSURING THAT UNDERSERVED POPULATIONS RECEIVE TIMELY DIAGNOSES AND EQUITABLE ACCESS TO HEALTHCARE. BY LEVERAGING THEIR EXPERTISE IN SERVING THE HISPANIC COMMUNITY, AKARI FOUNDATION AIMS TO EMPOWER FAMILIES AND IMPROVE HEALTH OUTCOMES THROUGH TARGETED OUTREACH AND ADVOCACY EFFORTS.

THE GRANT WILL SUPPORT THE PROJECT TITLED, EARLY CHILDHOOD PROGRAMMING: EARLY CONNECTIONS FOR NURTURING RESILIENT FAMILIES AND THRIVING CHILDREN WHICH COMMITS TO SUPPORTING FAMILIES WITH YOUNG CHILDREN, HELPING THEM OVERCOME LIFE'S CHALLENGES SUCH AS: MITIGATE THE EFFECTS OF FAMILY RISK FACTORS, TRAUMA, AND TOXIC STRESS. ENHANCE PARENTS AND CAREGIVERS' CAPACITY AND KNOWLEDGE TO CARE FOR THEIR CHILDREN. MENTAL HEALTH SERVICES FOR CHILDREN AND CAREGIVERS. EDUCATIONAL WORKSHOPS, TRAINING AND CONSULTATION FOR CHILDCARE PROVIDERS TO ENSURE THEY HAVE THE NECESSARY KNOWLEDGE AND SUPPORT ADDITIONALLY, PROVIDING SERVICES THROUGH VARIOUS MEANS, INCLUDING IN PERSON AT LOCATIONS ACROSS THE COUNTY, IN CLIENT HOMES, VIA PHONE, AND VIRTUALLY, TO INCREASE ACCESSIBILITY.

THE GRANT WILL SUPPORT THE PROJECT TITLED CARE FOR CAREGIVERS: MENTAL HEALTH & EMOTIONAL WELLBEING CARE FOR RARE CAREGIVERS PROGRAM FOR THE PURPOSE IN CAPTURING THE MOST EFFECTIVE PARTS OF OUR LEARNING FROM THE PY22 GRANT AND CONTINUE TO BROADEN AND DEEPEN OUR SUSTAINABLE ABILITY TO ADDRESS UNMET AND DISCONNECTED MENTAL HEALTH AND EMOTIONAL WELLBEING (MH & EW) NEEDS OF THOSE IN THE RARE DISEASE CAREGIVER COMMUNITY, REGARDLESS OF WHERE THEY ARE IN THE CONTINUUM OF THEIR CAREGIVING JOURNEY.

THE GRANT WILL SUPPORT THE PROJECT TITLED MENTAL HEALTH SUPPORT GRANT PROGRAM FOR THE FOLLOWING PURPOSE OF PROVIDING LIFE-CHANGING CAMPS AND PROGRAMS SERVING CHILDREN LIVING WITH SERIOUS ILLNESSES AND THEIR FAMILIES AROUND THE WORLD, TOTALLY FREE OF CHARGE. SERIOUSFUN PROGRAMMING AND FACILITIES ARE SKILLFULLY ADAPTED TO FIT THE DIFFERENT CULTURES AND MEDICAL CONDITIONS OF CAMPERS. EVERY ATTEMPT IS MADE TO BE INCLUSIVE AND ACCESSIBLE. THE MEDICAL EXPERTISE AT CAMPS ENABLES THEM TO SUPPORT CHILDREN WITH MORE THAN 100 DIFFERENT TYPES OF CONDITIONS INCLUDING CANCER, BLOOD DISORDERS, HEART DISEASES, IMMUNOLOGICAL DISORDERS, NEUROLOGIC CONDITIONS, GENETIC CONDITIONS, AND METABOLIC DISORDERS.

ONGOING GRANT IN SUPPORT OF ANGEL FLIGHT NE'S 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 AVAILABLE IN THEIR GEOGRAPHICAL AREAS. PARTICIPATING IN EXPANDED MARKETING TO VARIOUS RARE/ULTRA-RARE GROUPS TO PARTNER AND EDUCATE THEM ON ANGEL FLIGHT NE'S FREE AIR TRANSPORTATION SERVICES IS PIVOTAL TO CONTINUED GROWTH.

GRANT WILL SUPPORT THE PROJECT TITLED RARE MENTAL HEALTH IMPACT GRANTS PROGRAM WHICH PROVIDES AN OPPORTUNITY FOR FOUNDATION LEADERS TO APPLY FOR GRANTS TO ASSIST IN CREATING PROGRAMS, EDUCATIONAL TOOLS/MATERIALS, AND SUPPORT NETWORKS TO ADDRESS UNMET MENTAL HEALTH AND SOCIAL SUPPORT NEEDS OF THEIR COMMUNITY. THE GOAL OF THE IMPACT GRANTS PROGRAM IS TO EQUIP PATIENT COMMUNITIES TO EXPAND AVAILABILITY AND EFFECTIVENESS OF TOOLS AND CAPABILITIES THAT ADDRESS CRITICAL MENTAL HEALTH NEEDS. A SECONDARY GOAL IS TO UTILIZE, PROMOTE AND MAKE AVAILABLE THE OUTPUTS FROM THE GRANT-FUNDED PROJECTS TO THE LARGER RARE COMMUNITY.

CONTINUE TO SUPPORT THE PROJECT TITLED, RONALD MCDONALD HOUSE CHARITIES GLOBAL HEALTH AND WELLNESS INITIATIVE, WITH THE PURPOSE OF FUNDING INNOVATION AND CAPACITY GRANTS TO FOUR (4) LOCAL RMHC CHAPTERS IN FRANCE, ITALY, AUSTRALIA, AND THE UNITED KINGDOM IN ORDER TO CONTINUE TO SUPPORT THE MENTAL HEALTH NEEDS OF FAMILIES AND CHILDREN, VIA THE RMHC'S GLOBAL HEALTH AND WELLNESS INITIATIVE. THIS INITIATIVE WILL HELP FAMILIES AND CAREGIVERS COPE WITH THEIR CHILDS ILLNESS OR DISEASE AND ADDRESS THE PSYCHOSOCIAL AND PHYSICAL WELL-BEING OF BOTH RMHC FAMILIES, AND THE STAFF CHARGED WITH CARING FOR THEM.

THE GRANT WILL SUPPORT THE PROJECT TITLED RAINBOW PROGRAM WHICH IS BOSTON CHILDREN'S HOSPITAL'S PATIENT CLINIC FOR 1,250 MEDICALLY COMPLEX AND RARE DISEASE DIAGNOSED CHILDREN. THIS PROJECT INCLUDES FOUR EFFORTS TO ADDRESS VULNERABLE TRANSFER MOMENTS FOR MEDICALLY COMPLEX PATIENTS, INCLUDING: 1. THE TRANSITION INTO CLINIC AS A NEW PATIENT, 2. THE TRANSITION OUT OF THE HOSPITAL AFTER AN ADMISSION, 3. THE TRANSITION BACK TO THE SCHOOL SYSTEM ANNUALLY OR AFTER A CHANGE IN MEDICAL STATUS NECESSITATES NEW ORDERS, AND 4. THE TRANSITION OUT OF OUR CLINIC TO ADULT PRIMARY CARE AS A YOUNG ADULT.

CONTINUE TO SUPPORT THE PROJECT TITLED, SPECIAL DAYS PROGRAM FOR RARE DISEASE YOUTH ACROSS THE UK, FOR THE PURPOSE OF COVERING THE ADDITIONAL COSTS ASSOCIATED WITH PROVIDING PERSONALIZED SERVICES TO RARE DISEASE PATIENTS THAT REQUIRE MORE INPUT FROM MEDICAL ADVISERS. 15% OF WILLOW FOUNDATION BENEFICIARIES ARE RARE DISEASE PATIENTS. THIS GRANT SHOULD PROVIDE SERVICES TO 150 UK-BASED RARE DISEASE PATIENTS.

THE GRANT WILL SUPPORT THE PALS MISSION OF HELPING PEOPLE WITH LIFE THREATENING DISEASES WITH ACCESS TO AERIAL TRANSPORTATION FOR CARE RATHER THAN TRAVELING HUNDREDS OF MILES VIA CAR OR BUS.

CONTINUE TO SUPPORT THE PROJECT TITLED, PEDIATRIC RARE DISEASE CARE COMMUNITY, FOR THE PURPOSE OF PROVIDING CONVENIENT AND AFFORDABLE ACCOMMODATIONS TO PATIENTS/FAMILIES RECEIVING HOSPITAL-BASED CARE IN CHICAGO. CHICAGO IS A GLOBAL HUB FOR RARE DISEASE SPECIALIST CARE, AND IMD GUEST HOUSE SUPPORTS IN PROVIDING ACCOMMODATION ASSISTANCE (SIGNIFICANTLY REDUCED PRICE OR FREE BASED ON INCOME LEVEL) SPECIFICALLY FOR THE RARE PEDIATRIC COMMUNITY SEEKING TREATMENT IN CHICAGO WHO CANNOT AFFORD THE COSTS OF AFFILIATED WITH EXTENDED STAYS NEAR THE HOSPITAL. GUEST HOUSE PROVIDES COMFORTABLE, AFFORDABLE, TEMPORARY LODGING FOR PATIENTS AND THEIR FAMILIES WHO MUST TRAVEL, FROM ACROSS THE US AND INTERNATIONALLY, TO CHICAGO FOR MEDICAL TREATMENT. IMD GUEST HOUSE ANTICIPATES SERVING 30 RARE PEDIATRIC DISEASE PATIENTS/FAMILIES (30 PATIENTS AND 45 PARENTS/FAMILY MEMBERS) OVER 1,000 CUMULATIVE NIGHTS THIS YEAR.

GRANT WILL SUPPORT THE PROJECT TITLED CAMP PROMISE, WHICH IS A FREE, WEEK-LONG CAMP AND YEAR-ROUND PROGRAM FOR KIDS, TEENS, AND YOUNG ADULTS WITH NEUROMUSCULAR DISORDERS. IN 2022 CAMP PROMISE RETURNED TO IN-PERSON EVENTS AT FIVE LOCATIONS ACROSS THE COUNTRY WITH ONE ADDITIONAL VIRTUAL OPTION. CAMP PROMISE PROVIDES A BARRIER-FREE, WEEK-LONG, OVERNIGHT CAMP FOR KIDS, TEENS, AND ADULTS LIVING WITH NEUROMUSCULAR DISORDERS - REGARDLESS OF AGE, CAPABILITY, OR ABILITY TO PAY.

THE GRANT WILL BE USED TO SUPPORT UNITED SPINAL ASSOCIATIONS ONGOING COMMUNITY SUPPORT RESOURCE CENTER (CSRC) OPERATIONS AND ITS RESULTING IMPACT ON THE WHEELCHAIR USER DISABILITY COMMUNITY, ESPECIALLY THOSE AFFECTED BY NEUROLOGICAL DISEASES AND DISORDERS. THE CSRC PROGRAM IS DESIGNED TO OFFER "HIGH TOUCH" PERSONALIZED RESPONSES AND SPECIALIZED VIRTUAL RESOURCES MEETING THE UNIQUE NEEDS OF WHEELCHAIR USERS LIVING WITH PARALYSIS, MOBILITY IMPAIRMENTS, SPINAL CORD INJURY (SCI), AND RARE DISEASES TO REACH THEIR HIGHEST POTENTIAL, REMAIN INDEPENDENT, HEALTHY, AND ACTIVE MEMBERS OF THE COMMUNITY AND WORKFORCE.

THE GRANT WILL SUPPORT THE PROJECT TITLED, ESPECIALLY FOR ME MUSEUM MEMBERSHIPS. EFM PROGRAMS ARE TAILORED TO THE UNIQUE NEEDS OF CHILDREN ON THE AUTISM SPECTRUM, WHO ARE DEAF OR HARD OF HEARING, AND WHO ARE BLIND/HAVE LOW VISION. THEY ARE HELD DURING BOTH LOW-VISITATION DAYTIME HOURS AND WHEN THE MUSEUM IS CLOSED TO THE PUBLIC AND ARE LIMITED IN SIZE TO MAINTAIN THE QUALITY OF THE EXPERIENCE. EVENTS ARE FREE TO ALL WHO ATTEND, INCLUDING CAREGIVERS AND SIBLINGS. THE CENTRAL GOALS FOR EFM EVENTS ARE TO PROVIDE INCLUSIVE INDOOR AND OUTDOOR LEARNING EXPERIENCES TO CHILDREN WITH DISABILITIES AND TO GIVE FAMILIES (CAREGIVERS AND SIBLINGS) THE CHANCE TO CONNECT WITH OTHERS FACING SIMILAR CHALLENGES.

THE GRANT WILL SUPPORT THE PROJECT TITLED, DISABILITY AWARENESS PROGRAM IN SCHOOLS, WHICH HAS THE PURPOSE OF DIFFERENT MECHANISMS TO ACHIEVE THE INTEGRATION AND NORMALIZATION OF PEOPLE WITH DISABILITIES. THIS TRAINING PROJECT ATTENDS TO THIS NEED BY PROVIDING COVERAGE THROUGH INCLUSIVE DAYS, CIRCUITS WITH DIFFERENT FORMS OF ADAPTED SPORT, ORIENTATION AND AWARENESS TALKS USING ICT AS THE MAIN MEANS OF COMMUNICATION, TRAINING DIFFERENT EDUCATIONAL CENTERS IN THE COMMUNITY OF MADRID.

THE GRANT WILL SUPPORT THE PROJECT TITLED, DIGITAL INCLUSION PROGRAMS, WHICH HAS THE PURPOSE OF HELPING FAMILIES/INDIVIDUALS WITH DIGITAL ACCESS. THE PROGRAMS PROVIDE 15 HOURS OF DIGITAL SKILLS TRAINING, ALLOWING PARTICIPANTS EARN NEW CHROMEBOOK OR IPAD AND A YEAR-LONG INTERNET CONNECTION IF NEEDED. WITH THE TOOLS AND SKILLS, GAINED THROUGH THE PROGRAM, GRADUATES ARE PREPARED TO LEVERAGE TECHNOLOGY IN WHATEVER WAY WILL BENEFIT THEM MOST. TGH'S DIGITAL LITERACY TRAINING FOCUSES ON FUNDAMENTAL SKILLS NEEDED TO COMPLETE HOMEWORK ASSIGNMENTS, APPLY FOR JOBS, COMMUNICATE WITH FRIENDS AND FAMILY, UTILIZE VITAL COMMUNITY RESOURCES, ACCESS TELEHEALTH, AND USE THE INTERNET SAFELY AND RESPONSIBLY.

THE GRANT WILL SUPPORT THE PROJECT TITLED, PROVIDING EDUCATIONAL OPPORTUNITIES FOR UNDERSERVED STUDENTS IN MA AND CA WHICH HAS THE PURPOSE OF SUPPORTING EDUCATORS TO PROVIDE HANDS-ON LEARNING OPPORTUNITIES IN SCIENCE AND MATHEMATICS CLASSROOMS, PROVIDE OPPORTUNITIES FOR STUDENTS TO GAIN A NEW PERSPECTIVE ON THEIR CAREER POSSIBILITIES AND BUILD THE SKILLS NEEDED TO PERSEVERE AND THRIVE VIA WORKSHOPS. THESE WORKSHOPS ARE INSPIRED BY THE CITIZEN SCHOOLS CATALYST PROFESSIONAL DEVELOPMENT PROGRAM, WHICH IS DESIGNED TO SUPPORT MIDDLE SCHOOL EDUCATORS IN FOSTERING A COLLABORATIVE LEARNING ENVIRONMENT THAT IS ASSET BASED, PROVIDES TIERED SUPPORT, AND ACCESS TO MENTOR RELATIONSHIPS CRITICAL TO STUDENT WELL-BEING AND SUCCESS.

THE GRANT WILL SUPPORT THE PROJECT TITLED, TRAUMA-INFORMED BEHAVIORAL HEALTH AND CASE MANAGEMENT SERVICES FOR FAMILIES EXPERIENCING HOMELESSNESS WHICH HAS THE FOLLOWING PURPOSE STAFFING INCLUDES A VARIETY OF HEALTHCARE PARTNERS IN THE BOSTON AREA AND FOCUSES ON MENTAL AND BEHAVIORAL HEALTH AS WELL AS CARE COORDINATION. INITIAL MEETINGS AND TREATMENT PLANS THROUGHOUT THEIR TIME AT SMC HELP RESIDENTS PARTICIPATE IN BOTH INDIVIDUAL AND GROUP WEEKLY THERAPY SESSIONS TO DEVELOP GREATER ECONOMIC AND EMOTIONAL STABILITY WHILE ON THEIR JOURNEY TO PERMANENT HOUSING. THE ULTIMATE GOAL FOR THIS PROGRAM IS TO DECREASE THE LENGTH OF STAY AT SMC FOR RESIDENTS. BY PARTNERING WITH UNIVERSITIES TO OFFER ROBUST CLINICAL INTERNSHIPS, SMC IS ALSO EXCITED TO CREATE A PIPELINE OF BEHAVIORAL HEALTH CLINICIANS AND HELP COMBAT THE CURRENT 6-9-MONTH AVERAGE WAITLIST FOR BEHAVIORAL HEALTH SERVICES IN BOSTON.

GRANT WILL SUPPORT THE PROJECT TITLED, EARLY STEPS TO SCHOOL SUCCESS PROGRAM, WHICH HAS THE PURPOSES TO WORK IN PARTNERSHIP WITH SCHOOLS AND COMMUNITY-BASED ORGANIZATIONS TO PROVIDE EDUCATION SERVICES TO CHILDREN FROM BIRTH TO AGE FIVE, SUPPORT THEIR PARENTS AND CAREGIVERS, AS WELL AS IMPLEMENT ONGOING TRAINING TO COMMUNITY EDUCATORS. THIS PROGRAM IS A LOW-COST, TARGETED APPROACH TO ENHANCING SCHOOL READINESS FOR CHILDREN LIVING IN SOME OF THE MOST IMPOVERISHED PARTS OF THE COUNTRY.

THE GRANT WILL SUPPORT THE PROJECT TITLED, YOUTH HEALTH EDUCATION AND DIGITAL HEALTH SOLUTIONS, WHICH HAS THE PURPOSE OF SERVING YOUNG PEOPLE VIA SCHOOL-BASED WORKSHOPS THAT ALIGN WITH NATIONAL HEALTH EDUCATION STANDARDS, THE CDC'S CHARACTERISTICS OF EFFECTIVE HEALTH EDUCATION CURRICULA, AND COMMON CORE STANDARDS. PHES RELATABLE NEAR-PEER DELIVERY OF IDENTITY-FORWARD HEALTH EDUCATION SUPPORTS A SENSE OF BELONGING FOR BIPOC, DISABLED, AND LGBTQIA+ YOUNG PEOPLE, WHO ARE OFTEN "OTHERED AND UNDERREPRESENTED IN TRADITIONAL HEALTH PROGRAMMING. PHES DIGITAL HEALTH SOLUTIONS REACH YOUNG PEOPLE WITHOUT A SCHOOL INTERMEDIARY, ALLOWING FOR SCALED IMPACT BEYOND CLASSROOM WALLS. PHE WORKS IN PARTNERSHIP WITH YOUNG PEOPLE THROUGH PAID LEADERSHIP OPPORTUNITIES LIKE OUR REGIONAL YOUTH ADVISORY BOARDS, WHO PROVIDE KEY FEEDBACK ON THE PROGRAM AND THE YOUTH DESIGN GROUP, WHO VET AND APPROVE ALL CONTENT ON PHES HEALTH APP, SELFSEA.

THE GRANT WILL SUPPORT THE PROJECT TITLED, EXPANDING LEAPS AQUATICS PROGRAM WHICH PROVIDES YEAR-ROUND SWIMMING LESSONS TO OVER 350 YOUNG PEOPLE AGES 7-15 ANNUALLY WITH THE GOAL OF MAKING SWIMMING AN ACCESSIBLE SKILL TO ALL NEW HAVEN YOUTH. BESIDES SEEKING TO PROMOTE WATER SAFETY, LEAP'S AQUATICS PROGRAM ALSO SEEKS TO BOOST THE CONFIDENCE AND COMFORT OF YOUTH FROM HISTORICALLY MARGINALIZED BACKGROUNDS IN THE WATER. AS PART OF THE OVERALL MISSION TO EMPOWER YOUTH AND DEVELOP THEIR LEADERSHIP, LEAP HIRES AND TRAINS A TEAM OF 10-20 LIFEGUARDS AND SWIM INSTRUCTORS, MANY OF WHOM LEARNED TO SWIM AT LEAP. ALL INSTRUCTORS AND LIFEGUARDS ENGAGE IN INTENSIVE TRAINING TO PROVIDE HIGH-QUALITY SWIM LESSONS AND BE PREPARED FOR EMERGENCY SITUATIONS THAT MAY ARISE. LEAP PAYS FOR NECESSARY CERTIFICATIONS AND TRAININGS FOR YOUTH WITHOUT THEM, THUS MAKING YOUTH NOT PREVIOUSLY CERTIFIED STILL ELIGIBLE TO SEEK EMPLOYMENT OPPORTUNITIES.

THE GRANT WILL SUPPORT THE PROJECT TITLED, SUPPORTING STRUCTURED LITERACY INTERVENTIONS, WHICH HAS THE PURPOSE OF PROVIDING TUTORING PROGRAMS FOR STUDENTS IN GRADES 1-12, WHO ARE READING LOWER THAN GRADE LEVEL. PROGRAM IS FREE OF CHARGE. EACH STUDENT ATTENDS 1-2 HOURS PER WEEK DURING THE SCHOOL YEAR AND CAN ATTEND 6-WEEK SUMMER SESSION. GOAL IS TO HAVE AT LEAST 97% OF STUDENTS INCREASE LITERACY SCORES BETWEEN OCTOBER 2023 AND MAY 2024.

THE GRANT WILL SUPPORT THE PROJECT TITLED, ONE-TO-ONE MENTORING WHICH HAS THE PURPOSE OF MENTORING RELATIONSHIPS OF 12 LITTLE SISTERS IN GREATER BOSTON WITH THE GOAL OF KEEPING MATCHES TOGETHER FOR A MINIMUM OF ONE YEAR. THE GRANT WILL HELP SUPPORT DIRECT COSTS, INCLUDING PERSONNEL COSTS, MATCHING ACTIVITIES, PROFESSIONAL SUPPORT, PROGRAMMING AND ACTIVITIES, AND OTHER DIRECT PROGRAM COSTS, SUCH AS THE FEES ASSOCIATED WITH CRIMINAL AND BACKGROUND CHECKS OF BIG SISTER MATCHES, VOLUNTEER RECRUITMENT EVENT COSTS, AND ACTIVITY EXPENSES. BSAGB'S OVERALL GOAL TO ENSURE GIRLS DEVELOP A POSITIVE SENSE OF SELF; BUILD COLLABORATIVE, CRITICAL THINKING, AND OTHER SOCIAL EMOTIONAL SKILLS; LEARN TO NAVIGATE CHALLENGES; IDENTIFY FUTURE ASPIRATIONS; AND ACCESS RESOURCES AND SUPPORT TO ACHIEVE POST-SECONDARY SUCCESS. THIS YEAR, BSAGB'S GOAL IS TO SERVE OVER 1,000 GIRLS IN ONE-TO-ONE MENTORING, WHICH INCLUDES MAKING 459 NEW MATCHES FOR GIRLS WAITING TO BE MATCHED WITH A BIG SISTER.

THE GRANT WILL SUPPORT THE PROJECT TITLED, HUNGER RELIEF TARGETED PROGRAMMING, WHICH HAS THE PURPOSE OF WORKING TO ADDRESS FOOD INSECURITY FOR CHILDREN AND SENIORS, AS AN ESPECIALLY VULNERABLE POPULATION AT RISK FOR HUNGER AND FOOD INSECURITY. THE FOOD BANK OF NORTHEAST GEORGIA WORKS WITH LOCAL SCHOOL DISTRICTS, SENIOR CENTERS, VOLUNTEERS, AND COMMUNITY MEMBERS TO IDENTIFY CHILDREN WHO COME TO SCHOOL CHRONICALLY HUNGRY AND SENIORS WHO LACK ACCESS TO HEALTHY FOOD.

GRANT WILL SUPPORT THE PROJECT TITLED EPIC ARTS WHICH CONNECTS YOUNG ADULTS WITH RARE OR CHRONIC CONDITIONS WITH SOCIAL AND EMOTIONAL SUPPORT VIA SOCIAL GROUP FOCUSED ON THERAPEUTICS ARTMAKING TO SUPPORT MENTAL HEALTH. EPIC ARTS IS A COMPLETELY VIRTUAL, WEEKLY THERAPEUTIC ART-MAKING PROGRAM LED BY A LICENSED ART THERAPIST FOR YOUNG ADULTS WITH RARE DISEASE DIAGNOSES. EPIC ARTS INCLUDES A VIRTUAL ART EXHIBITION OF SELECTED ART PIECES CREATED DURING THE PROGRAM TO SPREAD AWARENESS OF THE STRENGTHS AND TALENTS OF PEOPLE WITH RARE DISEASES AS WELL AS THE MENTAL HEALTH CONCERNS THAT CAN ACCOMPANY A RARE DIAGNOSIS.

THE GRANT WILL SUPPORT THE PROJECT TITLED, BOTTOM LINE ACCESS, SUCCESS & CAREER CONNECTIONS MODEL WHICH HAS THE PURPOSE OF ENHANCING STUDENT SUPPORTS, INCLUDING: REPLENISHING AN EMERGENCY FUND TO SUPPORT IMMEDIATE NEEDS (E.G., INTERNET CONNECTIVITY, BOOKS FOR COURSES, ETC.) AND BUILDING OUT A MENTAL HEALTH SUPPORT AND HOUSING FUND FOR STUDENTS TO ADDRESS THE MANY NON-ACADEMIC BARRIERS THEY FACE GETTING INTO AND STAYING ENROLLED IN COLLEGE. THE PROGRAM IS BASED ON HYBRID MODEL THAT INCLUDES THREE CORE COMPONENTS: ACCESS, SUCCESS, AND CAREER CONNECTIONS HELP COACH YOUNG PEOPLE FROM HIGH SCHOOL THROUGH COLLEGE AND CAREER PLACEMENT.

THE GRANT WILL SUPPORT THE PROJECT TITLED, THOMPSON ISLAND CONNECTIONS: INSPIRING CONFIDENCE AND CURIOSITY IN BPS MIDDLE SCHOOL STUDENTS WHICH HAS THE PURPOSE OF PARTNERING WITH SEVEN BOSTON MIDDLE SCHOOLS TO BRING STUDENTS TO OUR ISLAND CLASSROOM FOR HANDS-ON SCIENCE LESSONS AND SOCIAL-EMOTIONAL LEARNING. THROUGHOUT THEIR MIDDLE SCHOOL YEARS, CONNECTIONS STUDENTS VISIT THE ISLAND MULTIPLE TIMES FOR INCREASINGLY IMMERSIVE EXPERIENCES, BEGINNING WITH ONE-DAY FIELD TRIPS AND ADVANCING TO OVERNIGHTS AND MULTI-DAY EXPEDITIONS. CONNECTIONS AIMS TO TEACH YOUNG PEOPLE TO "THINK LIKE SCIENTISTS." IMMERSED IN NATURE, THEY ARE ABLE TO EXPLORE AND GENTLY INTERACT WITH THE GREAT DIVERSITY OF LIFE AND ECOSYSTEMS SUPPORTED BY THE ISLAND.

THE GRANT WILL SUPPORT THE PROJECT TITLED, DISABILITY AWARENESS PROGRAM IN SCHOOLS, WHICH HAS THE PURPOSE OF ENABLING TREATMENT ACCESS AND ADHERENCE FOR BENEFICIARIES FROM LOW-INCOME HOUSEHOLDS IN SOUTH AFRICA AND SUB-SAHARAN AFRICA. THE PROGRAM ELEMENTS INCLUDE PATIENT FACING SUPPORT, PSYCHOSOCIAL AND EMOTIONAL SUPPORT, EARLY DETECTION OF CHILDHOOD CANCER OR LIFE-THREATENING BLOOD DISORDER, AND ADVOCACY PROGRAMS.

SUPPORT THE PROJECT TITLED, RONALD MCDONALD HOUSE CHARITIES GLOBAL HEALTH AND WELLNESS INITIATIVE YEAR 2, WITH THE PURPOSE OF FUNDING INNOVATION AND CAPACITY GRANTS IN THE AMOUNT OF $50,000 TO FOUR (4) LOCAL RMHC CHAPTERS IN FRANCE, ITALY, AUSTRALIA, AND THE UNITED KINGDOM IN ORDER TO CONTINUE TO SUPPORT THE MENTAL HEALTH NEEDS OF FAMILIES AND CHILDREN, VIA THE RMHC'S GLOBAL HEALTH AND WELLNESS INITIATIVE. THIS INITIATIVE WILL HELP FAMILIES AND CAREGIVERS COPE WITH THEIR CHILD'S ILLNESS OR DISEASE AND ADDRESS THE PSYCHOSOCIAL AND PHYSICAL WELL-BEING OF BOTH RMHC FAMILIES, AND THE STAFF CHARGED WITH CARING FOR THEM.

SUPPORT THE PROJECT TITLED, SPECIAL DAYS PROGRAM FOR RARE DISEASE YOUTH ACROSS THE UK, FOR THE PURPOSE OF COVERING THE ADDITIONAL COSTS ASSOCIATED WITH PROVIDING PERSONALISED SERVICES TO RARE DISEASE PATIENTS THAT REQUIRE MORE INPUT FROM MEDICAL ADVISERS. 15% OF WILLOW FOUNDATION BENEFICIARIES ARE RARE DISEASE PATIENTS. THIS GRANT SHOULD PROVIDE SERVICES TO 150 UK-BASED RARE DISEASE PATIENTS.

SUPPORT THE PROJECT TITLED, PEDIATRIC RARE DISEASE CARE COMMUNITY, FOR THE PURPOSE OF PROVIDING CONVENIENT AND AFFORDABLE ACCOMMODATIONS TO PATIENTS/FAMILIES RECEIVING HOSPITAL-BASED CARE IN CHICAGO. CHICAGO IS A GLOBAL HUB FOR RARE DISEASE SPECIALIST CARE, AND IMD GUEST HOUSE SUPPORTS IN PROVIDING ACCOMMODATION ASSISTANCE (SIGNIFICANTLY-REDUCED PRICE OR FREE BASED ON INCOME LEVEL) SPECIFICALLY FOR THE RARE PEDIATRIC COMMUNITY SEEKING TREATMENT IN CHICAGO WHO CANNOT AFFORD THE COSTS AFFILIATED WITH EXTENDED STAYS NEAR THE HOSPITAL. GUEST HOUSE PROVIDES COMFORTABLE, AFFORDABLE, TEMPORARY LODGING FOR PATIENTS AND THEIR FAMILIES WHO MUST TRAVEL, FROM ACROSS THE US AND INTERNATIONALLY, TO CHICAGO FOR MEDICAL TREATMENT. IMD GUEST HOUSE ANTICIPATES SERVING 30 RARE PEDIATRIC DISEASE PATIENTS/FAMILIES (30 PATIENTS AND 45 PARENTS/FAMILY MEMBERS) OVER 1,000 CUMULATIVE NIGHTS THIS YEAR.

SUPPORT THE PROJECT TITLED, LIFE-SAVING CRISIS SERVICES, WHICH HAS THE PURPOSE TO SUPPORT TREVOR'S CRISIS SERVICES. THESE SERVICES ADVANCE THE MENTAL HEALTH AND EMOTIONAL WELL-BEING OF LGBTQ YOUNG PEOPLE THROUGH FREE AND CONFIDENTIAL CRISIS COUNSELING AVAILABLE 24/7 VIA PHONE, TEXT AND INSTANT MESSENGER. THROUGH THIS PROGRAM, TRAINED CRISIS COUNSELORS CONNECT WITH LGBTQ YOUTH AND FOLLOW A COMPREHENSIVE SUPPORT MODEL THAT INCLUDES A RISK ASSESSMENT, CRISIS DE-ESCALATION, AND PLANNING FOR CONTINUED SAFETY.