Pediatric pain, especially in the hemophilia population, is under-recognized and under-treated. Barriers to adequate treatment include lack of knowledge, variability of practice, and outmoded beliefs. All of these factors lead to a culture of slow…
People with bleeding disorders are often connected to and with various community members such as local and national foundations/associations, their home health company, nurses , pharmaceutical representatives, etc. While people are often encouraged…
This research project will illustrate the improvements to joint range of motion and hospital utilization (which includes emergency room visits, hospital admissions, and central line infections) in persons with hemophilia A (with and without…
The primary aim of this study is to determine if people with bleeding disorders and chronic pain will attend and find benefit from an 8-week mindfulness-based yoga program. This program was chosen because of its focus on building skills in the areas…
Objective:
Recombinant factor IX Fc fusion protein (rFIXFc) is an extended half-life therapy approved for the treatment of children and adults with hemophilia B. B-LONG parent (NCT01027364) and B-YOND extension (NCT01425723)…
The hemophilia and thrombosis centers in Tucson and Phoenix would like to join efforts to make a meaningful contribution to our understanding of the mental health profile of our pediatric population. This knowledge could contribute to a more…
A survey link will be distributed to all hemophilia treatment center social workers with the ask that they forward on to the various staff members at their center. Social workers and other staff will have separate surveys. The questions will be…
Catalyst Biosciences recently announced that the U.S. Food and Drug Administration (FDA) has granted Fast Track Designation to marzeptacog alfa (MarzAA), the company’s subcutaneous (SQ) factor VIIa therapy. Catalyst is developing MarzAA for the…
Donald “Ziggy” Douglas, executive director of the Hawaii Chapter of the National Hemophilia Foundation, passed away at his home on November 8th, 2020.
Ziggy joined NHF in November 2017. His zeal for advocacy and for enriching the lives of…