FOR PUBLIC COMMENT - JUNE 3, 2021
This June marks a painful anniversary for the inheritable blood disorders community and the world. On June 5, 1981, the first cases of what would come to be known at HIV were reported by the…
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Review the State of the Science Research Summit
Following the community listening sessions and working group efforts, individuals, families, and experts came together for the State of the Science Research Summit, on September 12-15,…
Objective:
The ongoing pediatric phase 3 paradigm 5 trial is assessing N9-GP (nonacog beta pegol, REBINYN®) use for routine prophylaxis and treatment of breakthrough bleeds in previously treated children with hemophilia B (FIX ≤2…
Introducing the Bleeding Disorders Research Collaborative (formerly the NRB)The purpose of the BDRC is to actualize an integrated research network that can accelerate our learnings to dramatically improve the experience of living with bleeding…
Objective:
The adolescent/adult pivotal phase 3 pathfinder 2 trial assessed N8-GP (turoctocog alfa pegol, ESPEROCT®) use for routine prophylaxis and treatment of bleeds in previously treated patients (PTPs).
Methods:…
FOR IMMEDIATE RELEASE
Media Contact
Ilana Ostrin
iostrin@hemophilia.org
212-328-3769
Today, the United States Supreme Court (SCOTUS) released a decision in California v. Texas, the most recent lawsuit concerning the…
A new article, “Emerging Immunogenicity and Genotoxicity Considerations of Adeno-Associated Virus Vector Gene Therapy for Hemophilia,” was published in the Journal of Clinical Medicine (JCM).
In this review, the authors discuss some of the…
A new paper published in The Journal of Haemophilia Practice advances the concept of shared decision making (SDM) between the hemophilia patient and their healthcare provider (HCP).
As a relatively new approach to care, SDM sheds the one-size-…