Great Lakes Hemophilia Foundation Inc

TO EDUCATE, SUPPORT AND ADVOCATE FOR THE BLEEDING DISORDERS COMMUNITY OF WISCONSIN.

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.

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.

COMMUNITY SERVICES AND PROFESSIONAL EDUCATION AND TRAINING:GREAT LAKES HEMOPHILIA FOUNDATION PROVIDES A VARIETY OF OPPORTUNITIES FOR INDIVIDUALS WITH BLEEDING DISORDERS. THE WISCONSIN BLEEDING DISORDERS CONFERENCE, MEN'S GROUPS, AND YOUTH PROGRAMS LIKE CAMP KLOTTY PINE PROVIDE INDIVIDUALS WITH BLEEDING DISORDERS AN OPPORTUNITY TO NETWORK WITH OTHERS LIVING WITH A BLEEDING DISORDER. CAMP SCHOLARSHIPS ARE PROVIDED TO YOUTH. AT CAMP, THEY ARE AMONG OTHER KIDS WITH BLEEDING DISORDERS AND OFTEN LEARN TO INFUSE THEREFORE GAINING INDEPENDENCE. EDUCATIONAL SCHOLARSHIPS ARE MADE AVAILABLE TO ASSIST INDIVIDUALS WITH BLEEDING DISORDERS TO GAIN MEANINGFUL EDUCATION ABOUT THEIR DISORDER OR LIFE SKILLS WHICH IN TURN LEADS TO JOB SKILLS THAT WILL ALLOW THEM TO GAIN EMPLOYMENT WITH HEALTH INSURANCE BENEFITS.INDIVIDUALS WITH CHALLENGING FINANCIAL SITUATIONS MAY APPLY FOR FINANCIAL ASSISTANCE THROUGH GREAT LAKES HEMOPHILIA FOUNDATION. MANY INDIVIDUALS WITH BLEEDING DISORDERS ARE AT OR JUST ABOVE THE FEDERAL POVERTY LEVELS. GREAT LAKES HEMOPHILIA FOUNDATION PROVIDES ASSISTANCE TO ENSURE INDIVIDUALS WITH BLEEDING DISORDERS CAN RETAIN HEALTH INSURANCE COVERAGE BY ASSISTING WITH COBRA PAYMENTS AND INSURANCE PREMIUMS. IN ADDITION, FUNDS ARE AVAILABLE TO ASSIST WITH MEDICAL BILLS AND BASIC LIVING NEEDS.GREAT LAKES HEMOPHILIA FOUNDATION IS COMMITTED TO ASSESSING REGIONAL TRAINING NEEDS AND PROVIDING TRAINING OPPORTUNITIES IN ITS ROLE AS THE REGIONAL CORE CENTER. AS THE REGIONAL CORE CENTER, STAFF PROVIDES TECHNICAL ASSISTANCE TO HEMOPHILIA TREATMENT CENTER STAFF THROUGH TRAINING USING A VARIETY OF TECHNIQUES. NEW PERSONNEL TRAINING IS CARRIED OUT: 1) BY STAFF EXCHANGE; 2) THROUGH ON-THE-JOB TRAINING BY OTHER TEAM MEMBERS DURING TEAM MEETINGS AND CLINIC USING A DEFINED SET OF DEMONSTRATED SKILLS AND KNOWLEDGE; 3) AT PROFESSIONAL MEETINGS; 4) AT TRAINING PROGRAMS LIKE THE PARTNERS PROGRAM; 5) THROUGH CONTACT WITH OTHER PROFESSIONALS ON A STATE, REGIONAL, AND NATIONAL LEVEL; AND 6) THROUGH TRAINING FROM REGIONAL CORE STAFF THAT INCLUDES INFORMATIONAL RESOURCE EMAILS, CALLS AND VIDEO CALLS.AS THE REGIONAL CORE CENTER, GREAT LAKES HEMOPHILIA FOUNDATION IS ALSO COMMITTED TO HELPING EXPERIENCED STAFF UPDATE THEIR KNOWLEDGE AND SKILLS BY PROVIDING ONGOING OPPORTUNITIES FOR PROFESSIONAL TRAINING AND GROWTH. THESE OPPORTUNITIES INCLUDE, BUT ARE NOT LIMITED TO PROVIDING DISCIPLE-SPECIFIC SYMPOSIA AND ANNUAL REGIONAL MEETINGS.

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.