SerpinPC, an experimental hemophilia therapy, at high dose safely reduced overall bleed rates by up to 88% and spontaneous joint bleeds by up to 94% in adults with severe hemophilia A and B, who were not using preventive treatment, according to top-line results from a Phase 2a…
News
A report describes — for the first time, according to study authors — the case of a girl who has both hemophilia A and C. To date, only 10 such cases had been documented in medical literature, all occurring in men. The case report authors highlight the importance of…
Ten U.K. families who are members of the Haemophilia Society have the chance to enjoy a free, virtual Camp in the Cloud experience offered by Over The Wall, a nonprofit specializing in activity camps for children living with serious disorders. The places, each worth £150 (about $206), are available on a first-come,…
Women who are carriers for hemophilia — meaning they can pass the disease-causing mutation to their children — think a more individually tailored, information-rich healthcare approach could improve the experience of getting or being pregnant, a small study found. “Healthcare professionals could use these insights to adapt their consultations to…
Preventive treatment with marzeptacog alfa activated (MarzAA) can reduce bleed frequency substantially in men with hemophilia A or B who developed inhibitors to conventional replacement therapies, according to data from a Phase 2 clinical trial. The findings were reported in the study, “Subcutaneous engineered factor…
Treatment with the investigational gene therapy Roctavian (valoctocogene roxaparvovec) can reduce bleeding frequency and the use of replacement therapies, while maintaining or improving the quality of life of people with severe hemophilia A for up to five years, updated Phase 1/2 trial data show. “These…
Bleeding disorder patients and their supporters are encouraged to participate on Sept. 18 in Unite Day, a national virtual event aimed at celebrating the community and underscoring the need for treatment for all. Unite Day complements participation in the annual Unite for Bleeding Disorders Walk, both presented by the…
To ensure the health and safety of participants given the ongoing COVID-19 pandemic, this years’ Bleeding Disorders Conference (BDC) will be held virtually Aug. 26–29. An additional day of pre-conference workshops is slated for Aug. 25. While the conference was meant to take place in Denver, Colorado, its…
The Hemophilia Federation of America (HFA) is now offering mental health and well-being courses, through its Learning Central program, to support people with hemophilia, as well as their caregivers. Topic areas include anxiety, suicide, trauma, pain management, depression, and grief. Offered resources in the program’s library can be…
The National Hemophilia Foundation (NHF), through its Nursing Working Group (NWG), has released new guidelines to help hemophilia A patients self-administer Hemlibra (emicizumab). In its announcement, the foundation also highlighted the issuance of new guidelines for nurses to ensure safe and effective administration of standard into-the-vein…
Recent Posts
- A quest to find references to bleeding disorders in sacred texts
- The importance of listening to those of us with bleeding disorders
- Many women with hemophilia-related mutations lack access to medical care
- How my sons define freedom as young men with hemophilia
- A hospital vending machine brought me back to ER visits with my son
