The Hemophilia Federation of America (HFA) and the National Hemophilia Foundation (NHF) jointly launched the “Together Project,” in which the two organizations will work together to address issues affecting the bleeding disorders community. Most of the partnership’s efforts will center on written content creation and visual designs, which…

This week, we celebrate Balloon Fiesta in Albuquerque, New Mexico. Nearly 600 hot air balloons fly overhead while we stand in the grass, looking up at the beautiful sight. I cannot help but think back to when my youngest son was 8 years old and unable to walk. We…

Factor and supplies used to take over my kitchen. Boxes of syringes, Betadine swabs, dressing kits, monthly Sharps containers, and box upon box of factor arrived and needed to be organized and put away. The number of items was overwhelming. Sometimes the boxes would stay unopened for a…

Provisions of a new law that went into effect on Oct. 1 allow families affected by hemophilia and other bleeding disorders who are under Medicare to better access skilled nursing facilities (SNFs), the National Hemophilia Foundation (NHF) announced. This law, known as the Hemophilia SNF Access Act, should…

My husband, Jared, and I are on the cusp of making a major life decision. This decision had always been part of our long-term plan. We just didn’t expect it to happen so soon. Still, one event led to another, and we found ourselves standing before the option we are…

Differences in sensory detection and pain thresholds were found in hemophilia patients taking prophylactics, compared to healthy individuals, and these differences did not change over the course of a one-year follow-up study. These findings indicate that “under prophylactic treatment, the existing difference in the pain profile between [people with…

No one likes to feel out of control of their body, but those of us affected by chronic illness know that when the disease rears its ugly head, we may struggle to find a sense of power. As the father of two sons with hemophilia, I understand how the storms…

Most people with hemophilia A on preventive treatment with Hemlibra (emicizumab) will experience spontaneous or traumatic bleeds at some point, according to a study using real-world data from Israel. Results also indicated the risk of spontaneous bleeds while on Hemlibra is higher for older individuals. “Our findings indicate that…

I’ve been busy setting up my personal website and blog lately. So far, chronic illness and disability are two of my major themes. My husband, Jared, has hemophilia and a seizure disorder, and I see him face the challenges of being disabled every day. His conditions affect our marriage, family,…

An online academic training program has been launched globally for people interested advocating for bleeding disorders care and treatment in their respective countries, as part of a partnership between the World Federation of Hemophilia (WFH) and the New York University (NYU) Robert F. Wagner…