OVERVIEW
The Association has been providing support services for Alaskans with bleeding disorders since its founding by Wayne and Louise Cobb and other interested families in 1990. In addition, the Association has been operating Alaska's only treatment center for hemophilia and other bleeding disorders. Recently, the Association entered into an agreement with Providence Alaska Medical Center in Anchorage where Providence would act as a provider on behalf of the Association and operate the treatment center. Providence provides physical clinic and office space, a pediatric hematologist to serve as medical director the treatment center, and agreed to hire the Association’s hemophilia nurse coordinator and administrative assistant as Providence employees. The Association agreed to turn over to Providence the federal grants it receives to assist in running the treatment center and paying salaries for the nurse coordinator and administrative assistant. THE TREATMENT CENTER
The treatment center is part of Region X, which includes Washington, Oregon, Alaska, and Idaho. Region X is based at the Oregon Health and Science University in Portland. The Treatment Center provides daily services to Alaskans (and those visiting Alaska) with bleeding disorders. The Treatment Center provides an array of services, including diagnosis, treatment, case management, and comprehensive clinics. Twice a year, the Treatment Center operates a comprehensive clinic in Anchorage for all Alaska bleeding disorder patients. Doctors and therapists from Outside travel to Alaska for the clinic to work with the Alaska treatment providers and provide treatment and guidance to Alaskan patients. Most recently, providers have travelled from OHSU in Portland. In the past, doctors have also visited from San Francisco as well as other areas. THE ASSOCIATION
The Association’s executive director since its founding has been Louise Cobb. She and her husband Wayne have worked tirelessly on behalf of the Association and the Alaskan bleeding disorder community. Under their leadership, the Association not only started and operated the treatment center since 1992, but has provided support services to Alaskans with bleeding disorders. These services include sponsoring camps for children with hemophilia and other bleeding disorders and their families and sponsoring and coordinating sending patients to camps Outside in both Oregon and California. The Association also sends representatives to both regional and national meetings of the National Hemophilia Association and Region X, provides post-secondary scholarships to those affected by bleeding disorders, assists with health insurance premiums, provides funding for travel and lodging for clinic, provides educational workshops, and provides a variety of other patient and staff support services. The Association provides support and guidance to Alaskans with bleeding disorders and advocates for patients and their families in their interactions with both care providers and insurance companies. The Association’s Board meets quarterly and its meetings are open to the public. The Board welcomes all who are interested in its activities to attend a meeting or reach out to Board members through this site. The Board welcomes volunteers and one can serve on a committee without being a Board member.
