GREAT LAKES HEMOPHILIA FOUNDATION INC
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Mission Statement
Great Lakes Hemophilia Foundation educates, supports and advocates for the bleeding disorders community of Wisconsin.
About This Cause
Great Lakes Hemophilia Foundation (GLHF) provides meaningful educational and networking programs as well as financial support services to Wisconsin’s bleeding disorders community. “Bleeding disorders” is a general term for a wide range of genetic-based, medical problems that lead to poor clotting and continuous (internal and/or external) bleeding. While hemophilia is the best-known bleeding disorder, many types exist and most are inherited. Doctors Richard Aster and Jacob N. Shanberge founded GLHF in 1974, along with a handful of fellow doctors and patients, to address the unique psycho-social and financial needs of families coping with bleeding disorders. Their intention was for medical professionals and GLHF to work in complement to provide comprehensive care, support and advocacy. Today, GLHF works closely with each of Wisconsin’s four hemophilia treatment centers. Together, we identify and deliver programs that improve the quality of life for bleeding disorder patients and their families. GLHF programs are designed to educate, support and advocate for individuals and families with bleeding disorders by: increasing public awareness; ensuring access to medical services; providing relevant information and resources; building a supportive community; and promoting choices that lead to optimal health and living life without limitations. EDUCATION • The Wisconsin Bleeding Disorders Conference, and other educational and networking gatherings held throughout the year, provide opportunities for patients and families to meet and learn from each other. During these sessions, they receive educational resources, meet with experts, and provide mutual emotional support for one another. • GLHF’s electronic newsletter contains information about research and treatment standards, tips for living with a bleeding disorder, news about patient educational programs, and more. • The three components of our Camp Program have been thoughtfully built to provide the best possible experiences for our clients, and to be accessible to all who are interested. The Medical and Scientific Advisory Council of the National Hemophilia Foundation recommends that prophylaxis be considered the optimal treatment regimen for people with bleeding disorders. Our camp program enables children to learn about their condition in a non-clinical setting, and the importance of a prophylactic treatment regimen for safely participating in both daily living and leisure activities. 1. Family Camp is a week-end program that immerses families in the camp experience, and fosters an appreciation of the importance of camp as an educational opportunity for their child. Families and siblings observe and learn from others facing similar challenges of having a family member with a chronic disease. 2. Camp Klotty Pine is the only bleeding disorders camp session in Wisconsin. It is a week-long summer camp session for children, ages 7-14, who have various bleeding disorders. While enjoying the summer camp experience, children receive valuable self-infusion training as they move toward their own self-care. 3. The Leader-In-Training (LIT) program is designed for 15-17 year old youth who wish to build on their camp experience by mentoring others. Over the course of the program, the youth grow as leaders by participating in multiple skill-building opportunities. SUPPORT • Our Patient Financial Assistance program helps economically disadvantaged patients and their families to access necessary basic medical treatment, as well as emergency care attention. • Scholarships for college or continuing education and training are made available to help our clients pursue careers that will meet their financial and insurance needs, as well as the physical considerations they may have. ADVOCACY • We encourage community members to monitor and assess issues pertaining to chronic disorders. They share stories to explain this often unfamiliar condition with the community and decision makers in an effort to promote services that will include the distinct needs of the bleeding disorders community. • We teach parents to be advocates for their children, regarding support and services in school, social, and health/medical related circumstances.