News
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…
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…
Concerns for Women with Polycystic Ovary Syndrome and Endometriosis
Health and Well Being, Pain Management, Women with Bleeding Disorders
Women with bleeding disorders and other medical concerns, or who have von Willebrand disease or hemophilia, are not necessarily at risk for…
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…
What is Therapeutic Phlebotomy?
Health and Well Being
While bloodletting was abandoned long ago by modern medicine, the procedure is still used today to treat specific medical conditions. Phlebotomy —…
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…
The Importance of Telehealth
Health and Well Being, Living with a Bleeding Disorder
Interview with Jacob Murcock, Chapter Executive Director, Nevada It was a pleasure for the foundation to sit down with Jacob to learn…
World Hemophilia Day 2024 Theme Revealed
Advocacy & Legislation, Health and Well Being, Living with a Bleeding Disorder
On April 17, 2024, the global bleeding disorders community will come together to celebrate World Hemophilia Day. The theme of the event…
WFH Humanitarian Aid Program supports Syrian refugees (Part 1: Karam’s story)
Advocacy & Legislation, Health and Well Being, Living with a Bleeding Disorder
The World Federation of Hemophilia (WFH) provides care to people with bleeding disorders (PWBDs) all around the world—including individuals living in refugee…
The State of Mental Health on College Campuses
Health and Well Being
Enrolling in college as a student with a mental health condition doesn’t need to be overwhelming or intimidating. Students who know their…
New Study Looks at Hemophilia Survival Rate Disparities
Health and Well Being, Industry News & Research, Living with a Bleeding Disorder
Black men experience much lower hemophilia survival rates compared to their white counterparts. Results of a new study published in the journal Haemophilia are…
International Hemophilia Survey Suggests Psychosocial Challenges and Lack of Shared Decision Making
Health and Well Being, Industry News & Research
Some compelling results from the ‘Hemophilia Life Stages and Changes Global Survey’ were recently announced in a new press release. The survey…
Help for People with Substance Abuse
Health and Well Being
The National Bleeding Disorders Foundation (NBDF) has published Document 279, “Recommendations on Reducing Barriers to Substance Use Disorder (SUD) Treatment Facilities and…
The Parent-Teacher Relationship
Health and Well Being, Living with a Bleeding Disorder
It’s normal for anyone to be concerned at the thought of a child with hemophilia in the classroom, but it can especially…
Healthy Living Items Assistance
Health and Well Being, Living with a Bleeding Disorder
Healthy Living Items Assistance helps individuals in the bleeding disorders community with the cost of medically necessary items that are not affordable…
Depression, anxiety prevalent among hemophilia patients: Study
Health and Well Being, Industry News & Research, Living with a Bleeding Disorder, Men with Bleeding Disorders
Analysis focused on 90 men with hemophilia A and B in Turkey by Lindsey Shapiro, PhD | September 15, 2023 About a quarter (24.4%) of…
Learn More About Patient Assistance Programs
Advocacy & Legislation, Health and Well Being, Industry News & Research, Living with a Bleeding Disorder
There are several programs and resources designed to assist individuals and families grappling with the financial burden of living with an inheritable…
Study Finds Men with Hemophilia Have Higher Rates of Depression, Anxiety, and Obesity than the General U.S. Male Population
Health and Well Being, Men with Bleeding Disorders
Hemophilia is a rare, inherited bleeding disorder in which the blood does not clot properly. Blood contains many proteins called clotting factors that…
Two New MASAC Documents Focus on Access to Substance Use Facilities and Treatment Recommendations
Health and Well Being, Industry News & Research
MASAC issued to two new documents during the NBDF’s Bleeding Disorders Conference this past August. The National Bleeding Disorders Foundation (NBDF) is…
Ask a Social Worker: How Can I Heal From Medical Trauma?
Health and Well Being, Living with a Bleeding Disorder
Advice on how to cope with post-traumatic stress disorder that’s related to a medical event. Ask a Social Worker is a monthly…
Making the Transition from Pediatric to Adult Care
Health and Well Being, Living with a Bleeding Disorder
Taking charge of your own health care can be daunting, but early preparation helps smooth the way. For people with bleeding disorders,…
In For a Bad Surprise
Advocacy & Legislation, Health and Well Being, Industry News & Research, Living with a Bleeding Disorder
As of 2022, the federal “No Surprises Act” protects people covered under group and individual health plans from receiving surprise medical bills…