Learning to Let Go: Fostering Independence
Let’s face it, adolescence is a challenging time even under the best of circumstances. As parents of teens with hemophilia and an inhibitor, one of those biggest challenges, preparing to let go, can be especially difficult. As children grow into…
Speak Up! Learning to Advocate for your Child
No matter what setting, be it school, day care or the treatment center, we all want to be the best advocate for our child. But sometimes this is easier said than done. As parents and caregivers of young children with hemophilia and an inhibitor many…
COVID-19 Vaccines: What to Expect
On Friday, November 6th NHF President and CEO Dr Len Valentino discussed the many unanswered questions regarding a COVID 19 vaccine and what it would mean for the world. You can listen to a recording of that webinar here.
Bringing families affected by Factor XIII deficiency together for a novel educational program
Register for COVID-19 Vaccines: What to Expect
We all want an end to this global pandemic, and an effective vaccine is a critical part of finding that path. However, there are many unanswered questions on the effectiveness of the vaccine, how it will be distributed, and who will have access to…
Identification of Challenges and Coping Strategies in the Management of Bleeding Disorders, From the Patient Perspective
Objective: We conducted a pilot study using a single open-ended question to elicit patient-perceived challenges and management strategies in individuals with bleeding disorders. The de-identified responses and themes expressed in…
Gene Therapy: What's New & What's Next Webinar
Gene therapy for hemophilia remains a very active area of research, although it may take longer than expected. Moderated by NHF President and CEO Leonard A. Valentino, MD, this webinar will feature Glenn Pierce, MD, PhD; Steve Pipe, MD; and…
Do Hemophilia Treatment Centers Want Or Need A Regional Ethics Committee?
Objective: The NHF Ethics Working Group’s (EWG) mission is to promote integrity and ethical behavior in the bleedings community. The EWG wants to determine if our Hemophilia Treatment Centers (HTCs) want or need a regional ethics…
The First National Patient Satisfaction Survey of U.S. HTCs
The federally funded hemophilia treatment center (HTC) network, with its model of a multidisciplinary care team (MDT) and regional infrastructure, has proven itself, over several decades, to be well suited to deliver quality, integrated healthcare…
Global Dosing Hold in Fitusiran Trials Initiated by Sanofi Genzyme to Investigate New Adverse Events
A joint statement of the World Federation of Hemophilia (WFH), European Haemophilia Consortium (EHC) and National Hemophilia Foundation (NHF)   November 6, 2020 – The WFH, EHC and NHF have learned of and subsequently confirmed a decision…