News


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.


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.

2019-10-Joint-Letter-Product-Safety-Issues

Genentech responds to NHF and HFA questions regarding Hemlibra.

CSL Behring Announces Printing Error on Humate P Packaging

This does not involve product safety or supply.

NHF and HFA continue to follow up on issues arising from Genentech’s">https://www.hemophiliafed.org/uploads/HFA_NHF-Particles-Letter-1.pdf">Genentech’s recent announcement regarding reports of particulate matter in vials of Hemlibra.

Octapharma’s Wilate® Receives Expanded Approval from FDA

This new approval represents an expansion of the therapy's initial VWD indication, which was granted by the FDA in 2009.

 

Genentech, a member of the Roche Group, today announced that the U.S. Food and Drug Administration (FDA) has approved Hemlibra® for routine prophylaxis to prevent or reduce the frequency of bleeding episodes in adults and children, ages newborn and older, with hemophilia A without factor VIII inhibitors (FVIII). The therapy, which was co-developed by Genentech, Chugai and Roche, was already FDA approved in the fall of 2017 for routine prophylaxis to prevent or reduce the frequency of bleeding episodes in adults and children with hemophilia A with FVIII inhibitors.

The National Hemophilia Foundation (NHF) is pleased to announce the 2018 NHF-Shire Clinical Fellowship award recipients: Hanny Al-Samkari, MD, of Boston Hemophilia Center/Massachusetts General Hospital and Harvard University, and Michael H. White, MD, of Emory University and Children’s Healthcare of Atlanta (CHOA).

Fall is upon us as crisper, cooler weather prevails across much of the country. It is arguably the season most evocative of change, and in that spirit NHF’s information resource center HANDI would like to share several resources that may offer guidance as you or a family member face a major life transition.

HANDI hopes that you find these resources to be helpful and informative!

Copay Accumulator Patient Impact

Watch this video to learn how Copay accumulator adjustments affect patients requiring specialty medications with no generic alternatives.

The National Heart, Lung, and Blood Institute (NHLBI) is currently seeking public feedback that will inform future research the agency will conduct on inhibitors to factor VIII (FVIII) in patients with hemophilia A. To this end, the NHLBI has released a Request for Information (RFI) to solicit perspectives and comments from the bleeding disorders community on potential strategies, scientific opportunities and priorities, and the requisite infrastructure to optimize inhibitor research.

As individuals with hemophilia live longer and reach life expectancy rates comparable to the general population, their healthcare providers will continue to encounter clinical challenges inherent in treating and managing aging patients, including cardiovascular disease (CVD). There are several established risk factors associated with CVD such as hypertension, overweight, obesity and an abnormal lipid profile.

Medscape has launched a new educational activity in their “Clinical Advances in Gene Therapy for Hemophilia” series, which is presented through a collaboration between Medscape, the National Hemophilia Foundation, the European Haemophilia Consortium and the World Federation of Hemophilia. The program is supported by an independent educational grant from BioMarin.

Bayer receives FDA approval for hemophilia A treatment

Bayer announced today that the US Food and Drug Administration (FDA) has approved Jivi® (BAY94-9027), the company’s long-acting site-specifically PEGylated recombinant factor VIII therapy for the treatment of hemophilia A in adolescents and adults 12 years of age and over. This treatment has been approved for prophylactic, on-demand and perioperative management of bleeding in this population.

Bayer receives FDA approval for hemophilia A treatment

Bayer announced today that the US Food and Drug Administration (FDA) has approved Jivi® (BAY94-9027), the company’s long-acting site-specifically PEGylated recombinant factor VIII therapy for the treatment of hemophilia A in adolescents and adults 12 years of age and over. This treatment has been approved for prophylactic, on-demand and perioperative management of bleeding in this population.