News

GET WIRED WITH HFA
Industry News & Research, Living with a Bleeding Disorder, Women with Bleeding Disorders
Feeling disconnected from knowledge about women’s health and research? Get WIRED with the Hemophilia Federation of America (HFA) is seeking women with bleeding…

Public Health Symposia Now Available on the NHF Website!
Industry News & Research
This summer’s Virtual Bleeding Disorders Conference (BDC) featured a pair of excellent public health symposiums, which were developed through an inspired collaboration…

COVID-19 and Coagulopathy: Frequently Asked Questions
COVID-19
What is COVID-19-associated coagulopathy? Is it any different from disseminated intravascular coagulopathy (DIC)? The most common pattern of coagulopathy observed in patients…

First Patient Dosed in Phase 3 Gene Therapy Trial
Industry News & Research
The purpose of the study is to evaluate the efficacy and safety of this investigational gene therapy in patients with moderately severe…

Unanswered Questions Remain in Gene Therapy Trial
Industry News & Research
This commentary was authored by six individuals with severe hemophilia, all of whom have worked to achieve better health outcomes for patients…

What’s Next for the ACA?
Advocacy & Legislation, Industry News & Research
The recent news about the passing of United State Supreme Court Justice Ruth Bader Ginsburg and nomination of Judge Amy Coney Barrett…

CSL Behring States Stimate Will Not Be Resupplied until 2022
Industry News & Research
NHF and HFA have been provided the following statement from CSL Behring. The statement says, in part: “Ferring Pharmaceuticals Inc. initiated a voluntary,…

Milwaukee County COVID-19 Update
COVID-19, Industry News & Research
The Milwaukee Unified Emergency Operations Center continues to put out up-to-date information for the citizens of Milwaukee County. This information is also…

NHF Wants Your Input as They Chart a Course for the Future. Take Their Survey Today!
Industry News & Research
The National Hemophilia Foundation (NHF) is working with the bleeding disorders community to envision our future for the next decade, and they…

NHF Friday Webinar – Gene Therapy: What’s New and What’s Next? October 2, 3 pm.
Industry News & Research
Gene therapy for hemophilia remains a very active area of research, although it may take longer than expected. To discuss this, join…

Wow, There is a Lot Going On.
COVID-19, GLHF News
Remember a few simple recommendations to stay safe during the pandemic and a possible second wave of infection: practice good hygiene by…

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…