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…
Camp Klotty Pine Builds Confidence and Pride
GLHF News
by: Karin Koppen, Director of Camp Klotty Pine and Community Outreach Every child brings their own set of unique experiences to…
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
August 12, 2019 saw the passing of longtime hematologist Shelby Lee Dietrich, MD at the age 95. Born in 1924, Dietrich spent…
Register Today for the 2019 Unite for Bleeding Disorders Walk, September 28 at the Milwaukee County Zoo!
GLHF News
We are only one month away from the Unite for Bleeding Disorders Walk, Setpember 28 at the Milwaukee County Zoo! Register your…
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…
6 Do’s and Don’ts for Better Sleep
Living with a Bleeding Disorder
by Ian Landau Taking Charge In his TED Talk, “Sleep is your superpower,” Matthew Walker, PhD, a professor of neuroscience and psychology…
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
Industry News & Research
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…
Good News! @GovEvers Signs Bipartisan #steptherapy Legislation into Law!
Advocacy & Legislation
Great Lakes Hemophilia Foundation (GLHF) is excited to announce that Governor Evers signed the WI Step Therapy bill on July 9. We…
Genentech Announces New Data from Hemlibra® Clinical Trial Program
Industry News & Research
Through a series of abstracts and oral presentations at the recent 2019 Congress of the International Society on Thrombosis and Haemostasis (ISTH),…
Octapharma Presents Final Data on Personalized Therapy with Nuwiq®
Industry News & Research
Octapharma recently announced new data on the benefits of their recombinant factor VIII therapy Nuwiq® in patients with hemophilia A. Nuwiq® is…
NHF Joins Organizations Urging Court to Protect ACA
Industry News & Research
Patient groups are urging the Fifth Circuit Court of Appeals to prioritize patient protections, including those for people with pre-existing conditions, when…
Sangamo and Pfizer Announce Interim Gene Therapy Findings
Industry News & Research
In an oral presentation at the XXVII Congress of the International Society on Thrombosis and Haemostasis (ISTH), Sangamo Therapeutics, Inc and Pfizer,…
Comparing Adherence and Physical Activity in Hemophilia A Patients
Industry News & Research
In a recently published study, a team of Italian investigators studied potential correlations between levels of physical activity and adherence to a…
NHF-McMasters Guidelines on ECRI
Industry News & Research
The ECRI Institute, an independent, nonprofit patient safety organization, has published the NHF-McMaster University Guideline on Care Models for Haemophilia Management in the…
Wisconsin Bleeding Disorders Conference Provides Opportunity to Learn, Connect and Build Relationships
GLHF News
“A major part of our experience in attending [the conference] has been the people we’ve met. It was a great opportunity to…
Children’s Storybooks Provide Insight and Education for Kids with Hemophilia
Living with a Bleeding Disorder
LA Kelley Communications has many books back in print that provide the bleeding disorders community with high quality educational materials. Their content…