News
Countries Across the Globe Join the Gene Therapy Race
Gene Therapy, Health and Well Being, Living with a Bleeding Disorder
Canada Considers Funding Patient Gene Therapy; India Conducts First Human Clinical Trials for Hemophilia A An excellent article explains how Canada’s government…
Gene Therapy Struggles in Market
Gene Therapy, Industry News & Research, Living with a Bleeding Disorder
Although it was eagerly anticipated, commercial sales of gene therapy are disappointing. BioMarin’s hemophilia treatment Roctavian had only one US patient last year….
New Device Can Diagnose Hemophilia Fast
Health and Well Being, Living with a Bleeding Disorder
A trio of researchers at Chung Yuan Christian University, Taiwan developed a device that can rapidly determine both blood type and whether…
Fear of Needles?
Health and Well Being, Living with a Bleeding Disorder
A phobia to needlesticks is a real thing. Read a great article here about how one father helped his son with hemophilia…
Learn More About 2024 Bleeding Disorders Scholarships
Industry News & Research, Living with a Bleeding Disorder
The National Bleeding Disorders Foundation (NBDF) HANDI Resources Center Team is pleased to announce new 2024 scholarship opportunities available for the bleeding…
Hemophilia B Gene Therapy Trial Data Published
Industry News & Research
A new paper published in The Lancet Haematology journal includes data from the HOPE-B clinical trial program that is investigating the hemophilia B gene…
Rebinyn Supplies Restored in 3,000 IU Vial Size
GLHF News
NBDF recently learned that Novo Nordisk now has 3,000 IU vial size of Rebinyn® back in stock. Rebinyn is the company’s recombinant…
Hemophilia B Therapy FDA Approved for Expanded Indication
Industry News & Research
The U.S. Food and Drug Administration (FDA) has approved a supplemental Biologics License Application for IXINITY® (Medexus), a recombinant factor replacement therapy to treat…
Green Bay’s Bets Bloody is May 5! Get Your Tickets Today!
GLHF News
Join us at the Resch Expo on Sunday, May 5 for our 4th annual Green Bay’s Best Bloody – where Green Bay-area bars and…
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…
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…
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…
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…
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…
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…
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…
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…
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…
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…