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If you want to be in the know about what’s going on at our organization, you’ve come to the right place!

Be sure to check back regularly to get our latest news updates.


Bayer Releases New Statement onf Kogenate Recall

HFA and NHF recognize that recalls can be unsettling for many in the bleeding disorders community. We are in communications with Takeda to obtain additional detailed and timely information.

This is a six-part activity designed to increase healthcare providers' knowledge of the treatment of hemophilia.

Letter to the NHF Community

Collaboration will unlock our potential and define our success.

NHF Announces 2020 Physical Therapy Excellence Fellowship

The Physical Therapy Excellence Fellowship is meant to provide support PTs interested in conducting research or clinical projects related to the care of patients with hemophilia.

This resource was created to provide much needed guidance to emergency department personnel who may encounter patients presenting with a bleeding disorder.

How FDA is Putting the Patient Voice at the Forefront of Gene Therapy Clinical Trials for Hemophilia

The impact of an FDA "Listening Session" on gene therapy for hemophilia.

Novo Nordisk Announces Launch of New Factor VIII Therapy

ESPEROCT® is a long-acting recombinant product for the treatment of hemophilia A.

NHF Awarded 4-star Rating from Charity Navigator

NHF maintains its prestigious 4-star rating from Charity Navigator, the largest independent charity evaluator in the US.

NHF, WFH, EHC Monitor Coronavirus Impact on Bleeding Disorders Community

The organizations continue to monitor the outbreak.

The new guidance issued by the U.S. Food and Drug Administration seeks to support both innovation and patient safety by providing an important regulatory framework for developers of investigational gene therapies.

NHF and HFA Hold Safety Summity

The summit was convened to address recent issues regarding recalls and product safety.

coreHem Mental Health

The Green Park Collaborative and the National Hemophilia Foundation launch project to develop a PROM to measure mental health outlook.

Study Looks at Postpartum Hemorrhage in Type 3 VWD

This study was based on a systematic literature review of peer-reviewed articles relevant to VWD and pregnancy, published between January 1982 and May 2019.

Dr. Leonard A. Valentino will be the foundation’s next President & Chief Executive Officer

Nationally recognized researcher Dr. Leonard Valentino to lead the Foundation into the future.

Patient Groups Urge Supreme Court to Swiftly Take Up Health Care Case

Groups argue patients need a quick resolution to ensure access to care.

The group of patients who participated in this study were teenagers living with hemophilia A and B, who averaged 16 years of age.

Medscape Launches Activity for Emergency Department Providers

The activity is intended for emergency medicine physicians, hematologists, pediatricians, nurses, and other healthcare professionals who manage patients with hemophilia.

On December 23rd, the BioMarin submitted a Biologics License Application for valoctocogene roxaparvovec to the U.S. Food and Drug Administration.

 

Sangamo transferred the investigational new drug application for their hemophilia A gene therapy candidate to Pfizer, which will now lead its phase 3 clinical development.

NHF's Excellence Fellowships support projects in the areas of nursing, social work, and physical therapy.

The goals of this activity are to increase clinician awareness of the latest data and advances in the development of gene therapy approaches for the treatment of hemophilia, as well as to increase clinicians' ability to critically evaluate key considerations for incorporating gene therapy strategies into patient care

Court Rules Against ACA Individual Mandate

US Court of Appeals for the Fifth Circuit rules on a key component of the Affordable Care Act, declaring that without a tax penalty, the individual mandate that most Americans have health insurance is unconstitutional.

Regulators Clear Roche Deal to Acquire Spark

Roche is poised to aquire Spark Therapeutics and it's hemophilia A gene therapy portfolio for $4.3 billion.

The findings of this study suggest that women with mild factor XI deficiency are more at risk for postpartum hemorrhage after a cesarean delivery, when compared to a control group.

The U.S. Food and Drug Administration first approved Jivi® in August 2018 for the treatment of hemophilia A in adolescents and adults 12 years of age and over, including for prophylactic, on-demand and perioperative management of bleeding.