News
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…
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…
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…
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…
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…
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…
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…
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…
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…
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…
VWD Book for Children!
Health and Well Being, Living with a Bleeding Disorder
Fun Facts About a von Willebrand Warrior is a new softcover storybook for children with von Willebrand disease that empowers and educates…
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…
The Importance of Transgender Health: Interview with Alexis Dinno
Health and Well Being, Living with a Bleeding Disorder
November was Transgender Health Awareness Month, a time to reflect on the experiences of transgender and gender nonconforming individuals seeking and receiving…
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…
Court Overturns Accumulator Adjuster Rule
Advocacy & Legislation, Living with a Bleeding Disorder
Court orders HHS to revise federal regulations permitting harmful copay accumulators In a preliminary victory for consumers, a federal judge in the…
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…