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News

Category: Living with a Bleeding Disorder
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May 24, 2022

My Biggest Fear Comes True for My Adult Son With Hemophilia

Living with a Bleeding Disorder, Health and Well Being

by: Cazandra Campos-MacDonald My biggest fear for my sons, who live with severe hemophilia, is an auto accident. When my oldest son, Julian, began to…

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May 24, 2022

Managing Bleeding Disorders Requires Attention to Mental Health

Health and Well Being, Living with a Bleeding Disorder

by: Jennifer Lynne It’s easy to spot physical damage, such as swollen joints, nosebleeds, limps, and bruises, when one suffers from a…

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May 24, 2022

Anxiety, Depression Need Better Management in Hemophilia: Survey

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

by: Lindsey Shapiro Ph.D.  Symptoms of pain, anxiety, and depression generally increased with disease severity in people with hemophilia and were also associated with…

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May 10, 2022

What Older People with Bleeding Disorders Need to Know About Osteoporosis

Health and Well Being, Living with a Bleeding Disorder

Compared with other groups, people with hemophilia have a higher risk of the disease. by: Kathryn Anne Stewart Osteoporosis, a disease of…

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May 10, 2022

6 Facts About Women and Hemophilia

Health and Well Being, Living with a Bleeding Disorder

Why it often goes misdiagnosed, the most common symptoms, and more. 1. Women with hemophilia are often undiagnosed or misdiagnosed Historically hemophilia…

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May 3, 2022

Hemophilia History: The Romanov Family – Insights From Historian Dr. Helen Rappaport

Living with a Bleeding Disorder, Industry News & Research, Uncategorized

Insights from historian Dr. Helen Rappaport – NHF sat down with historian Dr. Helen Rappaport to learn more about how hemophilia impacted…

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March 10, 2022

Advocating for Your Care in the Emergency Room

Living with a Bleeding Disorder, Health and Well Being

by: Lena Volland, PT, Ph.D.(c). In this video, Lena Volland, PT, DPT, Director of Education at the NHF, discusses how to prepare…

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March 10, 2022

Hemophilia A vs. B: What’s the Difference?

Industry News & Research, Living with a Bleeding Disorder

Much is the same when it comes to hemophilia A and B, but a few key differences change how common—and how treatable—they…

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March 10, 2022

Ask a Social Worker: How Can I Be an Advocate for the Hemophilia Community?

Health and Well Being, Living with a Bleeding Disorder

Advice for people who are looking to help raise awareness. by: Bobby Korathu, MSSA, LCSW. Korathu is a social worker at the…

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March 10, 2022

Four Reasons to Establish Care at a Hemophilia Treatment Center

Health and Well Being, Living with a Bleeding Disorder

Learn why HTCs can be partners in care over the course of a lifetime. If you or someone you love has been…

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March 10, 2022

A Brief History of Gene Therapy: What It Means and Its Promise for the Hemophilia B Community

Industry News & Research, Living with a Bleeding Disorder

Over 10,000 individuals worldwide have been treated with various gene therapy products. Gene therapy is a medical treatment that uses DNA to…

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March 10, 2022

National Hemophilia Foundation “Starts the Conversation” During Bleeding Disorders Awareness Month, March 1-31

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

Awareness month campaign encourages the community to raise their voices and share what is most important and relevant to their conditions throughout…

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February 24, 2022

Clinical Study and New Website to Focus on von Willebrand Disease and Pregnancy

Living with a Bleeding Disorder, Health and Well Being

This new study was developed to increase understanding of how best to manage bleeding during delivery and the postpartum period in women…

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February 16, 2022

Hemophilia and Blood Clots: A Surgery That Nearly Cost Me My Life

Living with a Bleeding Disorder

VWD, Hemophilia B and Surgery as a Woman. Jennifer Lynne, a woman with Hemophilia B and VWD, faced surgery… and almost lost…

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January 5, 2022

New Study Looks at Physical Activity Risk in Patients with Hemophilia A

Industry News & Research, Living with a Bleeding Disorder

This study designed to assess the link between physical activity levels, FVIII infusion, and occurrence of bleeding episodes. Results of a recently…

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January 4, 2022

Seek Immediate Medical Care for These Bleeds

Health and Well Being, Living with a Bleeding Disorder

Here’s everything you need to know about the most dangerous bleeds, including symptoms and preventive measures. by: Michael Hickey Members of the…

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December 15, 2021

Clinical Study and New Website to Focus on von Willebrand Disease and Pregnancy

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

The onset of childbirth and the postpartum period are times when women with von Willebrand disease (VWD) are at an increased risk…

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December 7, 2021

New Data Analysis Sheds Light on Bleeding Patterns in Young VWD Patients

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

Historically, data on infants and toddlers (ITs) with von Willebrand disease (VWD), particularly relevant to bleeding patterns, has been lacking. To address…

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December 7, 2021

New Paper Highlights Integrated Care Model and the National HTC Network

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

For more than 40 years, the hemophilia treatment center (HTC), the U.S. HTC Network (USHTCN), and its model of integrated, patient-centered care…

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November 9, 2021

Patient-Reported Data Informs New Study on Sexual Health and Hemophilia

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

An understanding of sexual health in people living with hemophilia (PWH), including difficulties with sexual activity and intimacy, has been historically lacking….

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October 20, 2021

What You Should Know About Hematomas

Health and Well Being, Living with a Bleeding Disorder

Bruises and hematomas are similar, but they have some important differences. See what causes hematomas, what makes them unique, and how you…

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October 7, 2021

NHF Applauds Congressional Enactment of The Hemophilia SNF Access Act

Industry News & Research, Living with a Bleeding Disorder

The National Hemophilia Foundation is thrilled to announce that its top legislative priority in 2020, The Hemophilia SNF Access Act. The National…

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September 29, 2021

State of Denial: Tips on How to Work with Your Insurance Provider When You are Denied Coverage for Services or Medications

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

by: Laurie Kelley When you submit an insurance form for coverage, have you ever been denied?   What should you do if you’ve already…

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September 1, 2021

Learn More About the Latest in Gene Therapy: FAQ’s, Clinical Trials and Scientific Research

Industry News & Research, Living with a Bleeding Disorder

The National Hemophilia Foundation (NHF) heard a lot of questions from the community about gene therapy clinical trials for hemophilia at its…

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