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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.


Nationwide Children’s Hospital Looks at Optimal Dosing in the Emergency Department

On February 28th, Genentech released a statement relating to the supply of Hemlibra as it relates to 2019-nCoV (novel coronavirus).

Joint Statement on Recall of VONVENDI Lots

On February 27th, HFA and NHF submitted a letter to Takeda focusing on preliminary questions regarding the recall.

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.

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.

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.

 

Hemlibra® Receives Expanded FDA Approval for Hemophilia A Patients Without Inhibitors

The Genentech therapy has been approved for routine prophylaxis in adults and children with or without factor VIII 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.