News

Hemophilia B Therapy to be Discontinued

Industry News & Research

CSL Behring recently announced that they are discontinuing Mononine®, the company’s human plasma-derived factor therapy indicated for the prevention and control of…

Read More

NHF’s Board of Directors Meeting

Industry News & Research

The National Hemophilia Foundation will be holding our quarterly Board of Directors meeting on Saturday, October 10th at 9:00 AM EDT. The Board…

Read More

Genentech Provides Updates on Hemlibra Product Particles

Industry News & Research

In the fall of last year Genentech reported that during a routine examination of batches of Hemlibra®, they found translucent particles composed…

Read More

NHF, HFA and Hemophilia Alliance Continue Push for Information on Stimate Recall

Industry News & Research

The National Hemophilia Foundation (NHF) and Hemophilia Federation of America (HFA) continue to follow up on issues arising from the recent recall of Stimate (desmopressin)…

Read More

New MASAC Recommendations Focus on Offsite Hemostasis Screening and Treatment

Industry News & Research

The National Hemophilia Foundation’s (NHF) Medical and Scientific Advisory Council (MASAC) issued two new documents, which were adopted by NHF’s Board of…

Read More

Mental Health During Coronavirus

COVID-19, Industry News & Research

by: Debbie de la Riva The collective pursuit to control the spread of coronavirus has resulted in an enormous challenge for the…

Read More

NHF’s 2020 Bleeding Disorders Conference Available On Demand Through September 30!

Industry News & Research

NHF’s Bleeding Disorders Conference was fully virtual this year and included more than 50 sessions. Those sessions are all available on-demand until…

Read More

BioMarin’s New Clinical Study to Focus on Antibody Development to AAVs

Industry News & Research

Last month, BioMarin learned that approval for their investigational hemophilia A gene therapy was not forthcoming but would in fact be delayed…

Read More

Mylan Initiates Voluntary Nationwide Recall of Four Lots of Tranexamic Acid Injection, USP Due to Carton Label Mix-Up

Industry News & Research

On September 1, 2020, NHF and HFA learned that  Mylan N.V. is conducting a voluntary nationwide recall of  four lots of Tranexamic Acid Injection,…

Read More

NHF Receives Five-Year CDC Grant for Education Programs

Industry News & Research

The National Hemophilia Foundation (NHF) has received a five-year cooperative agreement from the Centers from Disease Control and Prevention (CDC). The collaboration,…

Read More

BioMarin Hemophilia A Clinical Development Program: An Update for the Hemophilia Community

Industry News & Research

BioMarin is committed to updating the community regarding our ongoing gene therapy clinical trial program in hemophilia A. BioMarin’s investigational gene therapy…

Read More

FDA Recommends Additional Data for BioMarin’s Investigational Gene Therapy

Gene Therapy, Industry News & Research, Living with a Bleeding Disorder

Biomarin announced that they received a Complete Response Letter (CRL) from the U.S. Food and Drug Administration (FDA) on August 18th for their…

Read More

Novo Nordisk Announces Near Resumption of Concizumab Trials

Industry News & Research

Novo Nordisk has announced that clinical trials for their investigational subcutaneous therapy concizumab will resume after an approximate five month pause, initiated…

Read More

Medical Advisory #427: Stimate Recall Update

Industry News & Research

August 13, 2020 CSL Behring and Ferring Pharmaceuticals have announced additional information about a recent recall of lots of Stimate® that was…

Read More

A New Study of Hemophilia Occurrence Finds Many More Cases in the United States

Industry News & Research

Hemophilia is an inherited bleeding disorder in which the blood does not clot properly due to a lack or decrease in a…

Read More

MASAC Encourages People with Bleeding Disorders to be Included in COVID-19 Vaccine Trials

COVID-19, Industry News & Research

Individuals with inherited and acquired bleeding disorders, including hemophilia have substantial deficits in coagulation, for which they receive a variety of protein…

Read More

New Online Space for Black/African Americans with Bleeding Disorders

Industry News & Research

In 2019, the National Hemophilia Foundation conducted a series of listening sessions and guided conversations with Black and African American members of…

Read More

Stimate Recall Update – CSL Behring & Ferring Pharmaceuticals Response to HFA-NHF Letter, Voluntary Recall Due to “Superpotency”

Advocacy & Legislation, Industry News & Research

Ferring Pharmaceuticals issued a voluntary recall of Stimate (desmopressin) nasal spray due to “superpotency” – in other words, amounts of desmopressin being higher than…

Read More

HFA and NHF Respond to Stimate Drug Recall

Industry News & Research

On July 21, CSL Behring and Ferring Pharmaceuticals announced a recall of multiple lots of Stimate (desmopressin) in the United States and in other countries…

Read More

Alex Borstein Brings Star Power to Raise Awareness of VWD

Industry News & Research

The National Hemophilia Foundation (NHF) and Takeda have teamed up to launch a series of PSAs and resources that hope to increase…

Read More

A New Path Forward in Research

Industry News & Research

At the National Hemophilia Foundation’s (NHF) Bleeding Disorders Conference, held virtually this year, NHF president and CEO Leonard Valentino, MD, asked each…

Read More

Establishing a New Paradigm to Realize Health Equity in Hemophilia

Industry News & Research

A paper published in the journal Haemophilia, suggests that clinical expectations for people with hemophilia have remained relatively static for years, falling…

Read More

Irish Investigators Review Fetal Precautions and Delivery Mode in Congenital Bleeding Disorders

Industry News & Research

It is well established that the clinical management of pregnant women with congenital bleeding disorders (CBDs) is challenging, as healthcare providers, including…

Read More

Stimate Recall: NHF and HFA Seek Answers

Advocacy & Legislation, Industry News & Research

Immediately following the issuance of medical advisories to the community regarding the recall of Stimate® (desmopressin nasal spray ) a product used to control…

Read More