News

Emergency Preparedness
Industry News & Research
The NHF is saddened by the loss of life and destruction of communities due to catastrophic fires in the west and a…

Who Gets a Vaccine?
COVID-19
Perhaps a more difficult job than discovering a safe vaccine for COVID-19 is producing enough to widely inoculate the public – and…

CDC Updates Guidance on COVID-19 Transmission
COVID-19
Although posted on the CDC website on Friday, September 18th and reported in the popular press, a major change in the guidance from…

Exercise Your Right to Vote!
Advocacy & Legislation
One of our most important civil liberties is the right to vote. With your vote, you have the power to influence public…

HFA’s State of the States: Summer 2020
Advocacy & Legislation, COVID-19
Policy and Advocacy work is increasingly important at the state level. In an effort to keep you informed about the work happening…

Unanswered Questions Remain in Gene Therapy
Gene Therapy, Industry News & Research, Living with a Bleeding Disorder
A recent commentary published in the journal Haemophilia, posits that while clinical trials for hemophilia gene therapy approach conclusion, there remain significant unanswered…

Sanofi Publishes Updates to BIVV001 Trial
Industry News & Research
Sanofi recently announced results from their phase 1/2a EXTEN-A trial for their investigational therapy BIVV001, which were published in the New England Journal…

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…

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…

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…

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)…

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…

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…

What to Do if You Miss Your Child’s Annual Exam
Living with a Bleeding Disorder
Routine healthcare visits are being held up because of the pandemic, so many parents are missing their children’s annual hemophilia treatment center…

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…

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…

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,…

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,…

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…

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…

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…

GLHF Recognized as Chapter of Excellence at NHF’s Virtual Bleeding Disorders Conference
GLHF News
Each year, NHF recognizes Chapters achieving high standards and demonstrating best practices through its Chapter Review Process. Chapters achieving Chapter of Excellence…

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…

Last Week’s Camp Klotty Pine Was Just What Camper’s Needed!
GLHF News
Last week, we had our first virtual Camp Klotty Pine experience – and the results were amazing! GLHF and camp staff provided…