Showing 2916 results for "hemophilia"

Learning Life Lessons Little by Little

My 24-year-old son, Julian, lives out of state, where he attends college and works as a barista. He pays his bills and “adults” well, making me immensely proud of him. When he was a teenager, I didn’t think I would live to see his adult years. Like most teenagers who…

Genentech Opens HemeWork to Help Patients Realize Life Goals

Genentech has launched a program called HemeWork to support the professional development and career goals of people living with hemophilia. HemeWork was developed with input from the Hemophilia Federation of America (HFA) and bleeding disorder advocates across the U.S. to help members of the bleeding disorder community…

Establishing a Routine for Our Toddler’s Stability

Our baby, Cittie, is now the textbook specimen of a toddler. My husband, Jared, often finds himself surprised by how quickly she is developing. Her vocabulary doubles by the day, and she is even learning interjections. As funny as it is to hear her suddenly screaming “Oh no!” or a…

NHF Bleeding Disorder Education Programs Receive $500K CDC Grant

The National Hemophilia Foundation (NHF) has received a $500,000 grant from the Centers for Disease Control and Prevention (CDC) to support education and outreach efforts in bleeding disorders. The five-year funding will help the NHF conduct programs for patients and healthcare providers related to inhibitor awareness, treatment for…

How to Avoid the Shame and Blame Game

I will never forget the first time the Hemophilia Federation of America asked me to facilitate a discussion group for parents of the newly diagnosed, at the federation’s annual symposium. About 30 parents attended, each with their own issues regarding their children. I sat in my chair and quickly…