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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.


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.

This “Notice of Intent” is being released now by NHLBI to provide eligible applicants ample time to develop competitive applications for submission in 2020.

NHF’s Dawn Rotellini Elected to WFH Board of Directors

The appointment is effecitve as of December 5, 2019.

Sangamo and Pfizer Announce Progress in Gene Therapy Trial at ASH

Pfizer and Sangamo presented their gene therapy updates in a poster presentation during the 61st Annual Meeting of the American Society of Hematology in Orlando, Florida.

These educational activities are designed specifically for healthcare providers who may be new to this field or who function outside the hemophilia treatment center network, including primary care physicians, obstetrician/gynecologists, nurse/nurse practitioners, dentists, oral surgeons and other allied professionals.

Guildelines on Emergency Department Management Approved

This document provides critical guidance for when emergency department personnel   encounter a patient with hemophilia or other bleeding disorder. 

This document provides critical guidance for when emergency department personnel   encounter a patient with hemophilia or other bleeding disorder. 

NHF and HFA Announce Safety Summity in January

HFA and NHF have responded to our community’s needs and assembled a Safety Summit to be held in January of 2020.

UniQure Announces Interim Hemophilia B Gene Therapy Trial Data

The therapy is for patients with severe and moderately severe hemophilia B.

Two Gene Therapy Medscape Acitivities Recertified

These activities are the product of a collaboration between Medscape, NHF, the European Haemophilia Consortium and the World Federation of Hemophilia.

Study Will Examine Brain Development in Young People with Hemophilia

This new study will investigate if new therapies have resulted in better outcomes related to brain function in young hemophilia patients.

Red Tie Runners team

The first team to run in the TCS New York City Marathon on behalf of NHF is an inspiration to all people with bleeding disorders.

Michael Brantley and MLB Player's Trust Gift to NHF

The winner of the 2018 MLB's Player's Choice Comeback Player of the Year Award selected NHF as his designated charity.

NHF Announces 2019 Kevin Child Scholarship Winner

Nitya Bhattarai is an active champion of people with bleeding disordres. He is planning to pursue a degree in pharmacy studies.