News

HANDI Highlights Resources for Historically Underserved Population

Living with a Bleeding Disorder, Women with Bleeding Disorders

October HANDI Highlights is dedicated to an historically underserved group within the inherited bleeding disorders community – women, girls, and people with the propensity…

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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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Can Someone with a Bleeding Disorder Join the Military?

Advocacy & Legislation, Living with a Bleeding Disorder

When you turn 18, you need to sign up with Selective Services. Will the armed forces accept someone with a bleeding disorder?…

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Adorable Educational Video for Kids!

Living with a Bleeding Disorder

Meet “Kevin” and learn about hemophilia. Cincinnati Children’s Hemophilia Treatment Center presents a colorful and age-appropriate video called “Clot Control” with animated…

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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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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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VWD: A Glimpse into Tomorrow’s Treatments

Industry News & Research, Living with a Bleeding Disorder

A session on von Willebrand Disease (VWD) at the National Bleeding Disorders Foundation Conference this past summer, highlighted patient-driven treatment advancements and…

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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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Navigating the Complexities of Hemophilia as a Family – In Loving Memory of James F. King, Sr.

GLHF News, Living with a Bleeding Disorder

“When I get to heaven, I will not forget about any of my grandchildren — and that includes Finnian (Patrick) and Liam,”…

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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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France Gets Gene Therapy

Gene Therapy, Industry News & Research, Living with a Bleeding Disorder

by: Patricia Inácio, PhD | July 9, 2024 Hemgenix, the first approved hemophilia B gene therapy, was administered to two patients in France, marking the first time…

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Defining Gene Therapy for Patients

Gene Therapy, Industry News & Research, Living with a Bleeding Disorder

Gene therapy is a welcome treatment for patients, which has been anticipated for decades. But how do parents and patients discuss this…

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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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WTAE-TV (PA) Feature: Copay Accumulators – Who Really Benefits?

Industry News & Research, Living with a Bleeding Disorder

In an NBDF interview, Bill Robie, Senior Director of Government Relations, highlighted the ongoing challenges of living with von Willebrand disease. In…

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