The Coalition holds several Factor IX Family Meetings throughout the year, and throughout the United States. Our meetings are mini one-day symposiums with wonderful speakers and topics. Our afternoon sessions feature a rap session and our “Are You Smarter Than Your Hemophilia” game, which is great fun for all ages to learn about hemophilia B.
The meetings are educational and supportive and especially helpful to families with no prior history of hemophilia B (about 30% of those diagnosed).
We create an “extended family” for our members, encouraging them to share contact information with one another to provide support for the challenges that come with being diagnosed with or having a child with hemophilia B.