GREAT LAKES HEMOPHILIA FOUNDATION INC
Programs
Hemophilia Treatment Care Network
PATIENT CARE: GREAT LAKES HEMOPHILIA FOUNDATION ADVANCES THE COMPREHENSIVE CARE FOR PEOPLE WITH BLEEDING DISORDERS THROUGH ITS PARTICIPATION IN AN INTEGRATED REGIONAL NETWORK OF HEMOPHILIA TREATMENT CENTERS THROUGH A GRANT FROM HRSA. THE DESIGN OF THE HEMOPHILIA TREATMENT CARE NETWORK PROVIDES PATIENTS WITH ACCESS TO MULTIPLE DISCIPLINES, EACH OF WHICH HAS SPECIFIC EXPERTISE IN BLEEDING DISORDERS CARE. THE HEMOPHILIA MODEL HAS BEEN ONE OF THE MOST SUCCESSFULLY MANAGED PUBLIC HEALTH PROGRAMS IN THE UNITED STATES. THE SUBSTANTIAL SOCIOECONOMIC BENEFITS OF COMPREHENSIVE SERVICES FOR THE HEMOPHILIA POPULATION ARE WELL DOCUMENTED AND INCLUDE DECREASED HOSPITAL IN-PATIENT-DAYS, INCREASED NUMBERS OF PATIENTS WITH THIRD-PARTY COVERAGE, LOWER COST OF CARE, AND DECREASED HEALTH CARE RESOURCE UTILIZATION. MORE IMPORTANTLY, STUDIES INDICATE THAT PERSONS RECEIVING CARE THROUGH THE HEMOPHILIA TREATMENT CENTER NETWORK HAVE A REDUCTION IN RISK OF DEATH DESPITE HAVING MORE SEVERE CLINICAL SYMPTOMS COMPARED TO THOSE RECEIVING NON-TREATMENT-CENTER CARE.GeographiesNot indicatedDatesOct 1, 2021 – Sep 30, 2022Source990No causes providedNo populations provided–$603.5KNational Database for Bleeding Disorders
RESEARCH/SURVEILLANCE: GREAT LAKES HEMOPHILIA FOUNDATION SUPPORTS THE SYSTEMATIC COORDINATED ASSESSMENT AND RECORDING OF HEALTH OUTCOMES OF INDIVIDUALS WITH BLEEDING DISORDERS IN A NATIONAL DATABASE. GREAT LAKES HEMOPHILIA FOUNDATION IS A SUB GRANTEE OF THE AMERICAN THROMBOSIS AND HEMOSTASIS NETWORK (ATHN) FOR THE CDC COMMUNITY COUNTS PROJECT. THIS DATABASE MONITORS THE HEALTH OF THE BLEEDING DISORDERS POPULATION WITH THE GOAL OF OPTIMIZED QUALITY OF LIFE FOR THOSE AFFECTED BY BLEEDING DISORDERS.GeographiesNot indicatedDatesOct 1, 2021 – Sep 30, 2022Source990No causes providedNo populations provided–$174.2KPublic Education on Bleeding Disorders
PUBLIC AND PATIENT EDUCATION:GREAT LAKES HEMOPHILIA FOUNDATION SUPPORTS A COMPREHENSIVE NETWORK OF HEALTH PROFESSIONALS AND PATIENTS AND THEIR FAMILIES IN PROVIDING PUBLIC EDUCATION ABOUT BLEEDING DISORDERS. HEALTH CARE PROFESSIONALS - THROUGH THE FEDERAL GRANT SUPPORTED REGIONAL NETWORK - EDUCATE TEACHERS, COACHES, EMERGENCY ROOM PERSONNEL, DENTISTS AND OTHER INDIVIDUALS WHO PROVIDE SUPPORT TO INDIVIDUALS WITH BLEEDING DISORDERS TO ENSURE SAFE AND HEALTHY OUTCOMES FOR THEIR PATIENTS. IN ADDITION, GREAT LAKES HEMOPHILIA FOUNDATION VOLUNTEERS ATTEND HEALTH FAIRS AND OTHER EVENTS TO HEIGHTEN THE PUBLIC'S UNDERSTANDING OF BLEEDING DISORDERS AND THE SYMPTOMS TO ENCOURAGE WOMEN AND GIRLS, IN PARTICULAR, TO SEEK MEDICAL SUPPORT FOR OTHERWISE POTENTIALLY UNDIAGNOSED CONDITIONS. GREAT LAKES HEMOPHILIA FOUNDATION ALSO MANAGES A STRONG VOLUNTEER ADVOCACY PROGRAM WHICH EDUCATES LEGISLATORS AND OTHER PUBLIC OFFICIALS ON THE INTERESTS AND CHALLENGES OF INDIVIDUALS LIVING WITH BLEEDING DISORDERS RELATED TO PUBLIC POLICY ISSUES. GLHF COORDINATES AND MANSGES A LARGE EDUCATIONAL CONFERENCE ANNUALLY FOR PATIENTS AND THEIR FAMILIES.GeographiesNot indicatedDatesOct 1, 2021 – Sep 30, 2022Source990No causes providedNo populations provided–$70K
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