Organization: The Bleeding Disorder Foundation
Mission: Advocate for access to care for those living with bleeding disorders. With bleeding disorders being one of the most expensive medical conditions to manage, access to care continues to be a challenge.
Activities: Camp I-VY: Camp I-VY is the heart of the bleeding disorder community. Each year for over 30 years, members of the bleeding disorder community have come together during the summer to learn about bleeding disorders in a 24/7 medically safe camp. Our medical services are donated by Bloodworks NW and Seattle Children's Hospital. The BDFW provides Camp I-VY programs to newly diagnosed youth and teen campers and their parents. Ages 0 to 10 are served through Camp I-VY Jr. and campers 7 to 15 are served through Camp I-VY. Campers are taught how to self-infuse their life saving medication, learn to ask questions of medical providers and build relationships with mentors from the bleeding disorder community.
Educational Outreach: Educational outreach is a key component of the BDFW mission. Due to the rarity of bleeding disorders, educational seminars are challenging to come across. The BDFW educational programs provide information on over 30 topics including: emergency management, going to school with a bleeding disorder, sibling issues, insurance challenges, affordable care act implications, physical therapy, how to be active, and many more. Our educational events reach all demographics of the community from the newly diagnosed, to the older population. In addition, we provide educational events on both the east and west side of the mountains to ensure all those with bleeding disorders have the opportunity to receive the critical information they need.
Advocacy: BDFW advocates for access to medical care and products for those with bleeding disorders. On average, 40% of the bleeding disorder community receive their medical care through state or federally funded insurance programs. Access to medical care is critical for individuals with bleeding disorders.
NTEE category: Voluntary Health Associations & Medical Disciplines
Secondary category: Health Care