Members of the advocate council are leaders in the Oregon bleeding disorders community. They work together to form a strong network of advocates and raise awareness of bleeding disorders among their state and local officials. We use both virtual and in-person visits, emails, Phone2Action, and social media to advocate on bills and health policy initiatives that are important to the bleeding disorder community.

Keeping locally elected officials informed of the struggles facing people who live with bleeding disorders is a challenge that PNWBD faces constantly. Your voice needs to be heard and understood by local and state government.

Yet not long ago, the idea of a child with a bleeding disorder going away to summer camp seemed impossible. Many parents, doctors, and camp sponsors believed the risk of accident or injury was too great. However, this is no longer the case. 

Camp Tapawingo provides a safe opportunity for children to experience the outdoors and enjoy camp activities such as swimming, archery, and campfires. The camp is often the highlight in a young person’s life as they meet others with a bleeding disorder for the first time. They also learn about their bleeding disorder and are taught to manage their bleeding disorder throughout their lifetime.  This week-long camp also provides an opportunity for siblings to connect on a more personal level.

A positive “can-do” approach is encouraged rather than focusing on what a camper cannot do. Kids are not seen as children with a bleeding disorder during camp, but simply as kids who have a very unique medical condition. The campers are encouraged to hike, swim in the pool and the lake, play ga-ga ball, and learn arts and crafts. Cabin groups go on overnight campouts, walk in the woods, enjoy special evening activities, and conclude the day with a relaxing campfire! Campers participate as they are capable, each setting her or his own pace. 

YETI (Youth Effectively Transitioning to Independence) Conference

YETI is a way for PNWBD and the Hemophilia Center at OHSU to showcase the strong program available for teens with bleeding disorders in Oregon and SW Washington. Participants learn and experience the best way to plan and manage a teen program. The event includes bleeding disorder organizations, teens, and representatives from treatment centers across the country getting together for a simultaneous teen weekend event and overlapping adult trainer program.

About seven years ago, (early Spring 2015) a group of people gathered to discuss the possibility of hosting such a conference here in Oregon. The concept began to take shape and eventually was funded by Pfizer. The attendees of the conference represented bleeding disorder organizations, like PNWBD (back then we were HFO!), and Hemophilia Treatment Centers, like the outstanding team available at OHSU.