In the News

FDA Approves Emergent’s New rFIX Therapy
FDA Approves Emergent’s New rFIX Therap

April 16, 2018

Grifols Donated More Thank 25 Million International Units of Blood Clotting Factor in 2017 

On April 16, Grifols, S.A., announced it has donated more than 25 million international units (IU) of blood clotting factor medicines over the last year. This donation is part of Grifols' commitment to provide a minimum of 200M IU to the World Federation of Hemophilia (WFH) Humanitarian Aid Program over eight years starting in 2014. An estimated 400,000 people around the world have hemophilia, yet only 25% receive adequate treatment.

View full press release

February 8, 2018

Rebinyn (Coagulation Factor IX (Recomionant), GlycoPEGylated) is Now Available in the U.S. 

Novo Nordisk recently announced the U.S. food an drug Administration (FDA) has approved the Biologics License Application (BLA) for REBINYN®, the company's recombinant, GlycoPEGylated therapy for the treatment of adults and children with hemophilia B (factor IX deficiency). A BLA is a request to the FDA for permission to introduce, or deliver for introduction, a biologic product into interstate commerce.

View Press Release.

June 2, 2017

FDA Approves Biologics License Application for Novo Nordisk's Hemophilia B 

Novo Nordisk recently announced the U.S. food an drug Administration (FDA) has approved the Biologics License Application (BLA) for REBINYN®, the company's recombinant, GlycoPEGylated therapy for the treatment of adults and children with hemophilia B (factor IX deficiency). A BLA is a request to the FDA for permission to introduce, or deliver for introduction, a biologic product into interstate commerce.

May 30, 2017

Partners Relaunches School Nurse Module on VWD 

The Partners in Bleeding Disorders Education Program recently relaunched "A school Nurses Guide to Bleeding Disorders: von Willebrand Disease." The purpose of this activity is to enable the learner to obtain knowledge about von Willebrand disease (VWD), its treatment, and any accomodations that must be made to ensure safe and positive learning environments to the student wit VWD.

January 12, 2017

Update on Congressional Actions Regarding the Affordable Care Act 

NHF's update on the latest measures to repeal and replace the Affordable Care Act. 

January 10, 2017

SANGAMO Receives FDA Approval for Hemophila A Gene Therapy Trial 

Green light means investigational therapy on adults can get underway in 2017.

January 11, 2017

FDA will Review LFB's Application for Recombinant Factor VIIa Therapy

New therapy is intended for patients with hemophilia A or B with inhibitors. 

December 21, 2017

Genetech's Emicizumab for Hemophilia A Meets Primary Endpoint in Phase III Study 

Emicizumab prophylaxis reduced the number of bleeds over time compare to no prophylaxis in people with hemophila A and inhibitors to factor VIII. Read Genetech's press release.

November 7, 2016

Virtual Reality Game Eases Infusion Process in Children 

The Hemophilia Treatment Center (HTC) at Nationwide Children's Hospital (NCH) in Columbus, OH, has spearheaded the development of a virtual reality game that is designed to provide a unique distraciton for children as they receive intravenous infusions of clotting factor. The game is called Voxel Bay and it was created through a collaborative effort by HTC staff, design experts at NCH and students from Ohio state University. 

September 22, 2016

New Research Sheds Light on Disease Suppression

Researchers at UNC at Chapel Hill School of Medicine say discovery may have application to hemophilia. Read more

July 8, 2016

Medical Advisory #418: Koate DVI Shipments on Hold

Kedrion Biopharma has announced this it is placing a volunteary, temporary hold on future shipments of Koate DVI. It does not expect any new shipments to go out until September 2016. If youa re currently using Koate DVI, you should contact your healthcare provider to discuss alternate optiosn for treatment until supply is available. Read more.

June 8, 2016

CSL's AFSTYLA® Receives FDA Approval for the Treatment of Hemophila A

New drug is the first recombinant single-chain therapy. Its long-lasting action may allow some patients to infuse twice weekly. Read more.

June 7, 2016

New MASAC Document on Dosing of Home Clotting Factor

The National Hemophilia Foundation's (NHF) Medical and ScientificAdvisory Council (MASAC) has issued a new document relevant to the dosing of clotting factor concentrates (CFC) at home for individuals with bleeding disorders.The document was adopted by NHF's Board of Directors on June 7, 2016. Document #242 is a valuable resource for understanding the complexities that go into home dosing. Read more.

May 26, 2016

SIPPET Study Results Published in NEJM

The detailed findings of the much anticipated SIPPET (Survey of Inhibitors in Plasma-Products Exposed Toddlers) study were recently published. The study, "A Randomized Trial of Factor VIII and Neutralizing Antibodies in Hemophilia A," appeared in The New England Journal of Medicine. The study found that previously untreated patients (PUPs) had a significantly higher incidence of inhibitors when treated with recombinant factor VIII (rFVIII) than those treated with plasma-derived factor VIII (pdFVIII) containing von Willebrand factor (VWF). Read more.

May 3, 2016

Digital Hemophilia Treatment Center Monitoring Linked to Significant Reducation in Bleeding Rates

Scientists from the Indiana HTC and MicroHealth present the results of a 12-month study on the effect of HTC digital monitoring on annual bleeding rates. Read more.

March 28, 2016

Study of 50 Years of Hemophilia Healthcare Outcomes Yields Surprises

Despite advancements in therapies, men with severe hemophilia still experience debilitating joint bleeds, lowering their quality of life. Read more.

March 9, 2016

FDA Approves New Recombinant Factor IX Therapy for Hemophilia B

CSL Behrings Idelvion® stays in the bloodstream longer, potentially leading to fewer infusions. Learn more.

February 2, 2016

Factoring in Factor X - FDA Approves Coagadex® for Rare Bleeding Disorder

Factor X (FX) deficiency is not ht erarest of the rare bleeding disorders, but it's rare enough. With a worldwide incidence of 1 in 500,000 to 1 in 1 million and only 400-600 patients in the U.S., the incentive to develop and market a FX concentrate has been lacking. That is, until now. Last October, the U.S. food and Drug Administration (FDA) announced that it has approved Coagadex®, a plasma-derived FX concentrate for hereditary FX deficiency, from Bio Products Laboratory, Ltd (BPL). BPL is a UK-based manufacturer of plasma-derived products, with U.S. headquarters in Durham, North Carolina. Coagadex is the first FX concentrate available. It is approved for on-demand traetment and control of bleeds, and for perioperative management of bleeding. Click here to read more.

February 2, 2016

The World Federation Activity Provides Information on Clinical Care Advancements - Ushering in a New Era of Treatment for all

When the World Federation of Hwemophilia (WFH) announced that a donation of 500 million units of factor had been made to the WFH Humanitarian Aid Program at the WFH 2014 World Conference, hemophila care worldwide changed in an instant. Click here to read more.

January 7, 2016

Latest Medscape Activity Provides Information on Clinical Care Advancements

"Current Trends in the Management of Hemophilia," posted on December 22, 2015, is the latest educational opportunity to become available from Medscape. It is part of the online series, Clinical Advances in Hemophilia: Management for Life. The purpose of this program is to increase the knowledge, skills and competence of clinicians in providing individualized management of hemophilia. Click here to read more.