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…

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…

Raremark, an online rare disease patient community, has launched a digital platform called Xperiome, aimed at streamlining the search for new medicines for rare disorders and incorporating more patient input into research. The goal is to help the pharmaceutical industry deliver innovative new therapies faster and smarter, the…

We’ve all had them: those amazing flings that morph into less-than-ideal relationships. During the initial honeymoon phase, the person we are with appears to do nothing wrong. At that moment, we are certain that this time is different. We believe that…

I’ve been reading a lot of parenting books lately. Now that our baby girl, Cittie, is a full-fledged toddler, I’m often unsure of how to deal with her. So many things about her are new to us, from her tendency to throw tantrums, to her…

Despite the challenges associated with holding a large conference online, the National Hemophilia Foundation did a fantastic job at this year’s Bleeding Disorders Conference by virtually presenting participants with essential information about treatments and future methods of living with bleeding disorders. Nothing will replace great friends getting together…

When I think back to the early days of raising my first of two sons with hemophilia, I see how I have changed. Back then, I was a scared young woman trying to figure out what the diagnosis of a rare medical condition meant. I found myself living…

I remember the first time I put my hand in your hand. You seemed to smile out of a sense of familiarity. You knew me in a way that knocked me to my knees. Your tiny hand filled my palm with delicate fingers and fresh new strength. Your touch seemed…

The back-to-school season is one of my favorites. Shopping for new school clothes, finding the right backpack, and getting school supplies are part of the tradition. As my son Caeleb enters his freshman year of high school, it looks to be the start of a vastly different year. There is…

The U.S. Centers for Disease Control and Prevention (CDC) is seeking input from people who live with pain, as well as their caregivers and healthcare providers to better understand values and preferences related to pain management. This information will help the CDC update and expand the…