Hemophilia Federation of America is a national nonprofit organization that assists, educates, and advocates for the bleeding disorders community.
When my son Thomas came into the world, he radically changed my knowledge base about hemophilia and other bleeding disorders. As this March comes to an end, I’ve been thinking about how far we’ve come as a family since Thomas’s diagnosis. I decided to look for the original email we sent to friends and […]
My name is Rick Kelly, and my wife, Josie, I are the proud parents of Forrest. Forrest has a rare bleeding disorder called afibrinogenemia, or Factor I deficiency. This is the story of afibrinogenemia in three anecdotes that explain what afibrinogenemia is, the current state of treatment and its outlook for the future. In sharing […]
If I had a nickel for every time someone asked me whether I was sure my daughter had hemophilia, well I wouldn’t be rich, but I would certainly have a heavy load of change tearing a hole through my pocket. Before my children were diagnosed, my only exposure to hemophilia was in my college genetics […]
For women carrying the hemophilia gene, getting a proper diagnosis is not easy. By definition, if a woman has clotting factor levels less than 50%, she has mild hemophilia. Many women report that medical professionals are still under the assumption that a bleeding disorder can only affect males. It is these challenges that can make […]
Today, HFA is pleased to introduce new blogger, Kari. Kari and her daughter have a rare bleeding disorder, Platelet Storage Pool Deficiency (PSPD). Continue reading as Kari introduces herself and shares more about her and her daughter’s diagnosis. Every morning when I wake up, the first thing that usually pops into my head is my […]
Moms need a safe place to land sometimes. With that in mind, HFA is launching a blog dedicated to all things mom! In this safe spot, moms of a child with a bleeding disorder will be able to read stories and draw inspiration from like-minded (and similarly […]
Click here for Lew Collins Story Thank you to Lew Collins and Matrix Health for sharing this story with HFA!
This video features Sal Livolsi & Linda Wyman-Collins; helping women with bleeding disorders is close to both of these community members hearts. Sal has a wife and son with hemophilia and Lew talks from personal experience of having a bleeding disorder.
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