News
Patient Groups Urge Supreme Court to Swiftly Take Up Health Care Case
Industry News & Research
Washington, D.C.—January 15, 2020— Patient and health advocacy groups representing millions of Americans with pre-existing conditions will file an amicus curiae or friend of the…
NHF’s 72nd Bleeding Disorders Conference
Industry News & Research
Please join us at NHF’s Bleeding Disorders Conference, August 6-8, 2020 in Atlanta, Georgia. Registration is now open! New this year! We…
Study Shows Higher Postpartum Hemorrhage in FXI Deficiency Patients Post Cesarean
Industry News & Research
Researchers from the Beth Israel Deaconess Medical Center in Boston, MA conducted a study on the link between postpartum hemorrhage (PPH) and…
Could a Cure for Hemophilia Be Personalized?
Industry News & Research, Living with a Bleeding Disorder
Has your hematologist ever asked that your child have pharmacokinetic (PK) testing? Chances are, the doctor wants to know how factor behaves…
UniQure Announces Interim Hemophilia B Gene Therapy Trial Data
Industry News & Research
uniQure recently announced interim clinical trial data related to a phase IIb clinical study of etranacogene dezaparvovec (AMT-061), the company’s investigational gene…
Two Gene Therapy Medscape Activities Recertified
Gene Therapy, Industry News & Research, Living with a Bleeding Disorder
The National Hemophilia Foundation (NHF) is pleased to announce that two educational activities in the “Clinical Advances in Gene Therapy for Hemophilia”…
Study Will Examine Brain Development in Young People with Hemophilia
Industry News & Research
A new observational study funded by Novo Nordisk, which is currently in the recruitment phase, will seek to better understand how hemophilia…
NHF and HFA Letter to Genentech Announcement of Particulate Matter in Emicizumab (HEMLIBRA)
Industry News & Research
October 10, 2019 The National Hemophilia Foundation and the Hemophilia Federation of America continue to follow up on issues arising from Genentech’s recent…
Octapharma’s Wilate® Receives Expanded Approval from FDA
Industry News & Research
October 9, 2019 Octapharma recently announced that their plasma-derived von Willebrand Factor (VWF)/Factor VIII (FVIII) product Wilate®, was approved by the U.S….
Genentech Issues Statement on Hemlibra Particles; MASAC Responds
Industry News & Research
October 7, 2019 Today, Genentech provided the following statement regarding reports of particulate matter in vials of Hemlibra. You can read Genentech’s…
HFA and NHF Share an Update on Product Safety Conversation with the FDA
Industry News & Research
October 7, 2019 HFA and NHF are pleased to share this brief update with the community concerning a recent meeting we had with the…
WFH Lead Research Points to Higher Global Hemophilia Prevalence
Industry News & Research
The World Federation of Hemophilia (WFH) recently announced the publication of a new study on the global prevalence of hemophilia, the results…
NHF and HFA Letter to the Community
Industry News & Research
October 1, 2019 Recently there has been a lot of news related to the safety of the bleeding disorders community. HFA &…
Introducing NHF’s Community-Powered Registry, MyBDC
Industry News & Research
The National Hemophilia Foundation (NHF) has created a community-powered registry for people with bleeding disorders, MyBDC. MyBDC will help researchers understand what…
WFH Lead Research Points to Higher Global Hemophilia Prevalence
Industry News & Research
The World Federation of Hemophilia (WFH) recently announced the publication of a new study on the global prevalence of hemophilia, the results…
Dedicated Hemotologist and Patient Advocate Dies at 95
Industry News & Research
August 12, 2019 saw the passing of longtime hematologist Shelby Lee Dietrich, MD at the age 95. Born in 1924, Dietrich spent…
Bayer Responds to NHF-HFA Joint Statement
Industry News & Research
Bayer announced the recall of two lots of Kogenate® FS antihemophilic factor (recombinant) 2000 IU vials on July 19, 2019. Bayer announced that…
Freeline Provides Updates on Hemophilia Gene Therapy Programs
Industry News & Research
The UK-based biotechnology company Freeline announced updates for its investigative gene therapies for hemophilia A and B at the recent XXVII Congress…
Joint Statement on Recall of Bayer Kogenate® FS Lots
Industry News & Research
Last week, Bayer announced the recall of two lots of Kogenate® FS antihemophilic factor (recombinant) 2000 IU vials. That highly concerning announcement…
Investigators Report Progress on New Subcutaneous Therapy
Industry News & Research
Results from a pair of phase 2 clinical trials of the investigational subcutaneous therapy, Concizumab were presented at the recent XXVII Congress…
Casebia Presents Dual Approach to Gene Therapy
Gene Therapy, Industry News & Research, Living with a Bleeding Disorder
Cambridge, Massachusetts-based Casebia Therapeutics recently presented new research on a novel therapy being developed for patients with hemophilia A. Casebia Therapeutics is…
Sanofi Presents Final Trial Data for rFVIII Candidate
Industry News & Research
Sanofi Genzyme reported positive data from their recently completed phase 1/2 EXTEN-A study of their investigational factor replacement product for hemophilia A….
BioMarin to Submit Marketing Applications to FDA and EMA
Industry News & Research
BioMarin Pharmaceutical recently announced that they plan to submit marketing applications to both the European Medicines Agency (EMA) and the U.S. Food…
uniQure Announces New Gene Therapy Trial Data
Industry News & Research
uniQure recently announced updated data related to a phase IIb clinical study of AMT-061, the company’s investigational gene therapy candidate for patients…