News

Video Celebrates Nurses in Bleeding Disorders Care

GLHF News

The National Bleeding Disorders Foundation (NBDF) marked its 75th Anniversary in 2023 by recognizing the contribution of various community stakeholders. As part…

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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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The Joy of Lobbying the Senate on Behalf of my Sons with Hemophilia

Advocacy & Legislation, Living with a Bleeding Disorder

How I advocated for the bleeding disorders community on Capitol Hill. by: Joe MacDonald Last Thursday, I visited Washington, D.C., to join my…

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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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Join us for a Bloody Good Time in Madison (April 7) and Green Bay (May 5) as GLHF’s Best Bloody Mary Series Continues!

GLHF News

Milwaukee’s Best Bloody, held February 25, raised more than $57,000 for the bleeding disorders community of Wisconsin! Congratulations to The Hideaway who…

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Think Positive!

Health and Well Being, Living with a Bleeding Disorder

A hemophilia diagnosis can upset your beliefs, feelings, and life. This book, written by Laureen A. Kelley, offers simple, concrete ways to…

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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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Study Shows Pain and Mobility Issues Common with Moderate Hemophilia

GLHF News

Patients ages 15 and older report problems more typical of severe disease by Patricia Inácio, PhD Progressive joint disease caused by repeat bleeds,…

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Navigating the financial challenges of bleeding disorders

Health and Well Being, Living with a Bleeding Disorder

As a nonprofit pauses its assistance, 5 programs still help those with hemophilia. by: Jennifer Lynne A person like me, with bleeding…

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The Wait is Over – Milwaukee’s Best Bloody is This Sunday! Get Your Tickets Today!

GLHF News

There’s still time to get your tickets to the Best Bloody Mary contest in WI – Milwaukee’s Best Bloody is this Sunday,…

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Save the date! GLHF’s Annual Wisconsin Bleeding Disorders Conference (WBDC) is June 7-9

GLHF News, Living with a Bleeding Disorder

Annually, GLHF hosts the Wisconsin Bleeding Disorders Conference for individuals and families living with a bleeding disorder. The weekend provides an opportunity…

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A Gathering of the Generations: Reflecting on the Past, Present and Future of the Bleeding Disorders Community

GLHF News, Living with a Bleeding Disorder

Saturday, April 20, 10 am – 2 pm, Blue Harbor Conventions Center, Sheboygan, WI In 2024, GLHF is celebrating 50 years of…

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GLHF Testifies Before the Assembly Health Committee About Harmful Insurance Practices Including PBMs and Copay Accumulator Adjuster Programs

Advocacy & Legislation, GLHF News

Great Lakes Hemophilia Foundation and community advocates spent the day in Madison on February 14 educating legislators and showing support for the Pharmacy Benefit…

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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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