News
Respiratory Viruses are Increasing this Winter – Protect Yourself from the Seasonal Spike of COVID-19
COVID-19, Health and Well Being, Industry News & Research
Infections from respiratory viruses, including the latest COVID-19 variants, are increasing this winter—but vaccines offer effective safeguards for people with inheritable blood…
FDA Approves Therapy for Rare Disorder Affecting Red Blood Cells
Industry News & Research
The U.S. Food and Drug Administration (FDA) has approved Fabhalta® (iptacopan), the first oral therapy for the treatment of adults with a…
Novo Nordisk Experiencing Shortage of Rebinyn 3,000 IU Vials
Industry News & Research
Novo Nordisk recently informed NBDF that they are experiencing a temporary shortage of their product Rebinyn®, specifically in the 3,000 IU vial…
Study Suggests Hemophilia Patient Preferences Evolving Along with Treatments
Health and Well Being, Industry News & Research, Living with a Bleeding Disorder
In recent years, the arrival of novel hemophilia treatments that are effective and less burdensome to administer have opened up new possibilities…
Takeda Issues Voluntary Product Withdrawal
Industry News & Research
Takeda today announced that it is conducting a voluntary market withdrawal for two product lots of 650 IU VONVENDI® [von Willebrand factor]…
Patient Receives First Hemophilia A Gene Therapy Outside a Clinical Trial
Gene Therapy, Industry News & Research
Roctavian™ was approved in the summer of 2023 for the treatment of adults with severe hemophilia. The first hemophilia A gene therapy…
Takeda’s Voluntary Withdrawal: Alert on Misprinted Labels for VONVENDI®
Industry News & Research
Takeda announces a voluntary withdrawal for 650 IU VONVENDI® due to misprinted labels showing incorrect expiration dates. Takeda announced today that it…
Nurses Working in the Bleeding Disorders Community Share Their Stories in These 2023 Video Interviews
Health and Well Being, Industry News & Research
In recognition of the National Bleeding Disorders Foundation’s 75th anniversary, the Nursing Working Group gathered recorded video interviews of established nurses working…
Who’s at Higher Risk for Iron Deficiency?
Health and Well Being, Industry News & Research, Living with a Bleeding Disorder, Women with Bleeding Disorders
Learn why women, girls, and people with the potential to menstruate (WGPPM) who have hemophilia, von Willebrand disease, or other inheritable blood…
Yale Researchers Explore the Possibilities of von Willebrand Factor
Industry News & Research, Women with Bleeding Disorders
Researchers at the Yale School of Medicine have been studying the key clotting protein von Willebrand factor (VWF), to shed light on…
Statement: HFA and NBDF Address WHO Recommendations
Health and Well Being, Industry News & Research
Hemophilia Federation of America (HFA) and the National Bleeding Disorders Foundation (NBDF) are deeply concerned by the World Health Organization’s (WHO) recommendation…
Pilot Study Explores Educational Needs of HTC Physical Therapists
Industry News & Research, Living with a Bleeding Disorder
Though it is generally recognized in the bleeding disorders community that physical therapists (PTs) are essential members of the core interdisciplinary teams…
Gene Therapy Preparedness – It’s Time to Get Educated
Industry News & Research, Living with a Bleeding Disorder
With the advent of gene therapy, patients will need to educate themselves more about eligibility, risks, compliance and costs. And they should educate…
Study Suggests Racial and Ethnic Disparities in Hemophilia and ITI
Industry News & Research, Living with a Bleeding Disorder
Findings of a new study uncovered specific disparities in hemophilia care by focusing on the use of immune tolerance therapy (ITI) in…
First Patient Dosed with Hemophilia Gene Therapy Candidate ASC618
Gene Therapy, Industry News & Research
The first patient has been dosed in ASC Therapeutics clinical trial of ASC618, the company’s investigational AAV8 vector-based gene therapy for patients…
The Liver Disease That’s on the Rise
Health and Well Being, Industry News & Research, Living with a Bleeding Disorder
Here’s why people with bleeding disorders need to know about it. Have you heard of metabolic dysfunction-associated steatotic liver disease, or MASLD?…
Study Results Encourage Discussion of Therapeutic Options for VWD Patients with Menorrhagia
Health and Well Being, Industry News & Research, Living with a Bleeding Disorder, Women with Bleeding Disorders
A new study investigated therapeutic options for von Willebrand Disease patients to help mitigate the negative health impacts of heavy menstrual bleeding. …
Hepatocellular Cancer Screening and Gene Therapy Preparedness the Focus of New Recommendations
Health and Well Being, Industry News & Research, Living with a Bleeding Disorder
NBDF’s Medical and Scientific Advisory Council issued two new documents making recommendations on criteria for hepatocellular cancer (HCC) screening and helping hemophilia…
New Hemophilia Gene Therapy Video Presentations Available
Industry News & Research
The National Bleeding Disorders Foundation (NBDF) is pleased to announce the availability of a series of video presentations on fundamental topics relevant…
Hepatocellular Cancer Screening and Gene Therapy Preparedness the Focus of New Recommendations
Gene Therapy, Industry News & Research, Living with a Bleeding Disorder
Two new documents have been issued by the NBDF’s Medical and Scientific Advisory Council (MASAC), which periodically writes recommendations and advisories on…
Hepatocellular Cancer Screening and Gene Therapy Preparedness the Focus of New Recommendations
Gene Therapy, Industry News & Research
Two new documents have been issued by the NBDF’s Medical and Scientific Advisory Council (MASAC), which periodically writes recommendations and advisories on…
Study Results Encourage Discussion of Therapeutic Options for VWD Patients with Menorrhagia
Industry News & Research
While the majority of women with von Willebrand disease (VWD) will experience heavy menstrual bleeding (HMB) often associated negative impacts on overall…
New publications provide guidance to increase identification of PWBDs
Industry News & Research
One of the World Federation of Hemophilia’s (WFH) 2021-2025 strategic priorities is to enhance the identification and diagnosis of people with bleeding…
Paper Highlights Treatment for Ultra-Rare Type 1 Plasminogen Deficiency
Industry News & Research
Type 1 plasminogen deficiency, also known as hypoplasminogenemia, is a very rare genetic disorder. A recent publication in the journal Haemophilia, represents a…