News
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…
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…
Study Shows Pain and Mobility Issues Common with Moderate Hemophilia
GLHF News, Pain Management
Patients ages 15 and older report problems more typical of severe disease by Patricia Inácio, PhD Progressive joint disease caused by repeat bleeds,…
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…
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,…
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…
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…
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…
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…
Takeda’s Voluntary Withdrawal: Alert on Misprinted Labels for VONVENDI®
GLHF News
Takeda announces a voluntary withdrawal for 650 IU VONVENDI® due to misprinted labels showing incorrect expiration dates. Takeda announced today that it…
Patient Receives First Hemophilia A Gene Therapy Outside a Clinical Trial
GLHF News
Roctavian™ was approved in the summer of 2023 for the treatment of adults with severe hemophilia A The first hemophilia A gene…
GLHF Celebrates 50 Years of Educating, Supporting and Advocating for the Bleeding Disorders Community of WI
GLHF News
GLHF is excited to celebrate 50 years of educating, supporting and advocating for the bleeding disorders community of Wisconsin. Since 1974, GLHF…
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…
Women with VWD or Hemophilia Not at Risk for Other Female Medical Problems – But Additional Concerns May Need Diagnosis and Treatment
Living with a Bleeding Disorder, Women with Bleeding Disorders
Women who have von Willebrand disease or hemophilia are not at risk for other female medical problems, but two common disorders in…
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…