NHF offers unique educational programs for families affected by rare bleeding disorders.  Our Rare Bleeding Disorders Conference is an educational program for families affected by rare bleeding disorders, specifically FX, FVII, FXIII and platelet disorders, such as Glanzmann’s thrombasthenia. In the future, NHF hopes to grow this program to include more rare bleeding disorders. This is an opportunity for families affected by these rare bleeding disorder to attend rare-specific educational sessions and meet other families in the bleeding disorder community, growing networks of support. The Rare Bleeding Disorders Conference is held in conjunction with NHF's Bleeding Disorders Conference.

Educational publications currently in development for families with rare bleeding disorders include a children’s book about a child with a rare bleeding disorder and a parent companion piece. Other publications include one-page informational fact sheets on factor X (10) deficiency, factor XIII (13) deficiency, and Glanzmann's thrombasthenia.

NHF hopes to grow this program and other educational resources for families with rare bleeding disorders.

If you have any questions, please reach out to rares@hemophilia.org.

View sessions from our virtual Rare Bleeding Disorders Conference.

Advertisement