Imagine you or a loved one have a bleeding disorder. Your career, hobbies, where you live, family planning, and many other life decisions are now all affected. Being part of a community that shares experiential knowledge often means the difference between effectively managing a chronic illness or being debilitated by it. Connections for Learning provides an opportunity for underserved people to attend NHF's Annual Meeting, the largest gathering of the bleeding disorders community in the U.S.
A bleeding disorder such as hemophilia affects approximately 20,000 people in the U.S., classifying it as a rare disease and putting patients at higher risk of geographic and social isolation. NHF has identified additional barriers that isolate our patient population and prevent them from receiving the support they need to manage their disease. Some of these barriers include language skills, ethnicity, and socioeconomic factors.
Being part of a community that shares experiential knowledge often means the difference between effectively managing a chronic illness like hemophilia or von Willebrand disease, or being debilitated by it. Similarly, patient education is the cornerstone of patient self-management and self-care. These two fundamental principles are at the core of this project, where participants have the opportunity to attend NHF's Annual Meeting where they will meet with peers and learn from experts.
NHF Annual Meeting is the largest gathering of people affected by bleeding disorders in the country. It offers a wealth of information from the nation's foremost clinicians in a prescribed, customized curriculum to address every aspect of living with a bleeding disorder. According to past participants, it is a life-changing experience for everyone, regardless of gender, age, race, religion, or hometown. In 2016, NHF is also proud to host the World Federation of Hemophilia's World Congress.
This project has provided additional documentation in a DOCX file (projdoc.docx).