News

Telling Your Life Story?

Health and Well Being, Living with a Bleeding Disorder

With the advent of self-publishing, many people who live with hemophilia—including patients, spouses, and children—are sharing their personal stories by publishing their…

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New Study Uncovers Breakthrough for Long-Term Hemophilia A Gene Therapy

Health and Well Being, Industry News & Research, Living with a Bleeding Disorder

 new preclinical study led by CHOP researchers, published in Nature Communications, offers promising insights into the long-term effectiveness of hemophilia A gene therapy….

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2025 World Hemophilia Day Theme Revealed

Health and Well Being, Industry News & Research, Living with a Bleeding Disorder

The World Federation of Hemophilia (WFH) announced on October 1st the new theme, “Access for All: Women and Girls Bleed Too” as…

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Ask a Social Worker: Can Someone with a Bleeding Disorder Join the Military?

Health and Well Being, Living with a Bleeding Disorder

Learn the steps you need to take if you’re interested in serving your country. To ask a social worker, email askasocialworker@bleeding.org. Learn More….

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Talking to Teens and Young Adults with Bleeding Disorders About Safer Sex

Health and Well Being, Living with a Bleeding Disorder

Learn why and how you should have these tough conversations. Learn More Source: National Bleeding Disorders Foundation, October 2024

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How Parents of Kids with Bleeding Disorders Can Avoid Burnout

Health and Well Being, Living with a Bleeding Disorder

Planning ahead and safeguarding your own health – physical and mental – can help keep your responsibilities from overwhelming you. Read More….

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Critical Policy Updates: Medicaid Changes, ACA Credits, and More

Advocacy & Legislation, Health and Well Being, Industry News & Research

Dive into NBDF’s August 2024 Government Relations Update for essential information on Medicaid unwinding, ACA premium tax credits, NIH reform, and state-level…

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Beyond Band-Aids: The Evolution of Bleeding Disorders Treatment

Health and Well Being, Living with a Bleeding Disorder

At the National Bleeding Disorders Foundation’s Conference this past summer, Dr. Karen Zimowski highlighted the latest personalized treatments for inherited bleeding disorders,…

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Charting New Waters in Women’s Bleeding Disorders Care

Health and Well Being, Living with a Bleeding Disorder, Women with Bleeding Disorders

A session led by Dawn Rotellini at the National Bleeding Disorders Conference this past summer, spotlighted inclusive care for women with bleeding…

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Learn More About Gene Therapy

Gene Therapy, Health and Well Being, Industry News & Research

A comprehensive document identifies 50 various publications about gene therapy, much of it accessible for parents and patients. The list includes: FAQs,…

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Gene Therapy’s Slow Start

Gene Therapy, Health and Well Being, Industry News & Research

Multimillion-dollar gene therapies were long awaited and desired, but patients were unsure whether insurance would cover the costs. So far, very few patients are…

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Navigating Labor, Delivery, and Postpartum with a Bleeding Disorder

Health and Well Being, Living with a Bleeding Disorder, Women with Bleeding Disorders

Learn why creating a birth plan with your medical team is essential. Source: National Bleeding Disorders Foundation, HemAware, September 2024

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A Nurse Practitioner Decodes Medical Research for the ’Gram

Advocacy & Legislation, Health and Well Being, Living with a Bleeding Disorder

Maya Bloomberg has drawn thousands of social media followers by making information on hemophilia and sickle cell anemia easier to understand. Source:…

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HANDI Highlights Back-to-School Resources

Health and Well Being, Living with a Bleeding Disorder

New Resources to Help Students with Bleeding Disorders. Learn more about how to help students, families, and school personnel become better prepared…

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Celebrating September: Awareness Highlights

Health and Well Being, Living with a Bleeding Disorder, Pain Management

September is filled with important observances that bring awareness to various causes. Join NBDF in celebrating Hispanic Heritage Month, Suicide Prevention Month, Pain Awareness Month,…

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Planting the Seeds of Leadership

Health and Well Being, Industry News & Research, Living with a Bleeding Disorder

NBDF’s National Youth Leadership Institute (NYLI) provides 18-24 year olds in the bleeding disorders community with leadership opportunities to encourage personal growth,…

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Travel Tips for Young Adults with Bleeding Disorders

Health and Well Being, Living with a Bleeding Disorder

A globe-trotting college traveler shares advice for traveling safely. Having a bleeding disorder shouldn’t keep you from seeing the world. Just ask…

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PTSD Can Affect People with Bleeding Disorders

Health and Well Being, Industry News & Research, Living with a Bleeding Disorder

While post-traumatic stress disorder is commonly connected with soldiers, people battling chronic illnesses can have it, too. Here’s how to identify the…

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HANDI Highlights Resources on Pain Management

Health and Well Being, Living with a Bleeding Disorder, Pain Management

As we enter the “dog days” of summer with high temperatures and heat weighing folks down throughout much of the US, it’s…

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FDA Rare Disease Innovation Hub to Enhance and Advance Outcomes for Patients

Health and Well Being, Industry News & Research, Living with a Bleeding Disorder

by: Patrizia Cavazzoni, MD, Director, Center for Drug Evaluation and Research and Peter Marks, MD, PhD, Director, Center for Biologics Evaluation and…

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Hemophilia Affects Everyone – What Are Some Truths About the Care Partner Journey?

Health and Well Being, Living with a Bleeding Disorder

Hemophilia truth time: hemophilia is a shared experience—affecting family, friends, and loved ones.  In a global survey of more than 2700 participants,…

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ERIN Initiative Champions Inclusivity in Inherited Bleeding Disorders  

Health and Well Being, Living with a Bleeding Disorder

Discover how the European Rare & Inhibitor Network (ERIN) is breaking barriers and advancing inclusivity for those with inherited bleeding disorders. This…

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For People with Bleeding Disorders, Adherence Is Still a Problem

Health and Well Being, Living with a Bleeding Disorder

Even as therapies for hemophilia have expanded and improved, the issue of not following treatment regimens as directed remains a major point…

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Black Men with Hemophilia Have a Shorter Life Expectancy than White Men

Health and Well Being, Men with Bleeding Disorders

A researcher of disparities in hemophilia care discusses her findings and what’s still left to learn. by:  James Langford In the early…

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