News

Takeda Announces Interim Trial Results for Investigational ITP Therapy

Health and Well Being, Industry News & Research

Takeda recently announced positive results from a phase 2 clinical trial of their investigational therapy (Mezagitamab), to treat patients with persistent or…

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Researchers Look at Impact of Factor X Deficiency on Patients/Caregivers

Industry News & Research

Hereditary factor X deficiency is an ultra-rare bleeding disorder that occurs in approximately 1 in 500,000 to 1 in a million people…

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New Hemophilia Fact Sheet Now Available

Industry News & Research, Living with a Bleeding Disorder

The fact sheet includes basic information about hemophilia. The National Bleeding Disorder Foundation’s (NBDF) HANDI Resource Center is pleased to announce the…

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What You Need to Know About Mild Hemophilia

Industry News & Research

Learn why experts consider the term to be a misnomer. by: Donna Behen Look up the word “mild” in the dictionary, and…

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Bleeding Disorders Awareness Month

Advocacy & Legislation, GLHF News, Health and Well Being, Industry News & Research, Living with a Bleeding Disorder

Each March, the community calls attention to inheritable blood and bleeding disorders during Bleeding Disorders Awareness Month. This time gives patients and…

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Von Willebrand Emergency Care Manual Now Available in Spanish

Health and Well Being, Industry News & Research

NBDF is pleased to announce that the Emergency Care for Patients with von Willebrand Disease treatment manual is now available in a Spanish language…

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Researchers Look at Impact of Factor X Deficiency on Patients/Caregivers

GLHF News, Industry News & Research

A new study published in the journal Blood Coagulation & Fibrinolysis, looked at the impact of hereditary factor X deficiency (HFXD) on patients…

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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…

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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…

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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…

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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…

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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]…

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Patient Receives First Hemophilia A Gene Therapy Outside a Clinical Trial

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…

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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…

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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…

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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…

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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…

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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…

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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…

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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…

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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…

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First Patient Dosed with Hemophilia Gene Therapy Candidate ASC618

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…

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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?…

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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. …

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