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…
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 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…
On October 30th, 2020, the Institute for Clinical and Economic Review (ICER) held a public meeting to discuss its evidence report on therapies for hemophilia A. ICER is an independent and non-partisan research organization that evaluates the…
The National Hemophilia Foundation is delighted to announce that Brian Duval of Golden Valley, MN was selected as the recipient of the 2020 Kevin Child Scholarship (KCS). Brian has severe hemophilia A and is currently attending the…
This summer's Virtual Bleeding Disorders Conference (BDC) featured a pair of excellent public health symposiums, which were developed through an inspired collaboration between NHF and several national blood disorder advocacy organizations.
These…
A coalition of 33 organizations, including the National Hemophilia Foundation, representing millions of people with pre-existing conditions launched an unprecedented effort today by releasing their top priorities for the next Administration. The…
Pfizer and Sangamo recently announced that the first patient has been dosed in the Phase 3 AFFINE (efficAcy and saFety Factor vIii geNe thErapy)…
Results of the first ever nationally uniform patient satisfaction survey (PSS) of hemophilia treatment centers (HTCs), were recently published in the journal Haemophilia, the findings of which represent further validation of the HTC network and its…