Hemophilia Federation of America is a national nonprofit organization that assists, educates and advocates for the bleeding disorders community.
Dear Addy, I鈥檓 the parent of a hemophiliac and I鈥檇 like to become more involved in advocacy work to support my child and the bleeding disorders community at-large. Does HFA have any advocacy programming available for parents? Signed, Active Advocate 聽 Dear Advocate, Yes! HFA recently announced the creation of a new Advocacy Leadership Council. […]
Dear Addy, My son is about to start summer vacation. While he is excited, I鈥檓 concerned about all of the activities he will be doing. It seems everything he enjoys involves risking a bleed. How do I monitor my child鈥檚 safety while allowing him to have fun this summer? Signed, Anxious About Summer Break Dear […]
My beautiful wife Jackie, and I have three boys: Desmond, 8-years-old, Liam, 5-years-old and Patrick, 3-years-old. Patrick has聽severe hemophilia A, and inhibitors. We live in middle Georgia. Until three years ago we聽knew nothing about hemophilia. We had no family history and it was the furthest thing from our minds as parents. We have two聽strong, […]
Kelly and Brian of Oregon never expected their son, Bubba, to have severe hemophilia A, and they certainly never expected Bubba to experience the complications of an inhibitor and chronic pain in his childhood. Kelly shared her family鈥檚 experiences with HFA with hopes that other families can learn from their experiences. How did you find […]
When my newborn baby was put into the Neonatal Intensive Care Unit (NICU) for a week, I was hit by a powerful force of immense strength and love I didn鈥檛 know I had.聽 聽My husband and I already were blessed with our firstborn son who did not have any health concerns.聽 While we love both […]
Below is an excerpt from our one-of-a-kind Dads’ book, Dads in Action: Real Stories from the Bleeding Disorders Community. This book is free to all dads who sign up for our Dads in Action program. ___________________________________________________ I am 38 years old. I live with severe Hemophilia A, but I don’t suffer from it. I have […]
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