News

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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Product Update from NovoNordisk

Industry News & Research

A manufacturing deviation at NovoNordisk’s Danish facility has led to potential underfilling of vials for NovoSeven©, NovoEight©, and Esperoct© – crucial treatments…

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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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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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Celebrating 50 Years of GLHF and You! Join Us on Sunday, October 13 for Our Community Picnic!

GLHF News

GLHF has been serving the bleeding disorders community for 50 years here in Wisconsin! It has been our honor to educate, support,…

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Come Walk With Us on September 28! Help Us Raise Crucial Funs to Support GLHF Programs and Services

GLHF News

We are just under two weeks away from this year’s Unite Walk! Join us at the Milwaukee County Zoo in Zoo Terrace…

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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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Pfizer Announces New Data from Hemophilia A Gene Therapy Study

GLHF News

Pfizer has announced positive topline results from their phase 3 clinical study of giroctocogene fitelparvovec, the company’s investigational hemophilia A gene therapy. …

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Attention Clinicians! New Bleeding Disorders Education Available from IHS

Industry News & Research

These new medical-based webinars will speak to key topics relevant to the care of patients with inherited bleeding disorders. NBDF is excited…

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New Resource Compilation on Gene Therapy for Hemophilia

Gene Therapy, Industry News & Research

Learn about Gene Therapy for Hemophilia with NBDF’s new resource collection. Find answers, research, and support. The National Bleeding Disorders Foundation (NBDF) is…

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NBDF Announces a New Enduring and Accredited Educational Activity Available to Healthcare Providers

Industry News & Research

The National Bleeding Disorders Foundation (NBDF) is pleased to announce a new enduring and accredited educational activity available to healthcare providers. “Exploring…

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Camp Klotty Pine – Celebrating Independence, Friendship and Fun – Celebrating Another Successful Year!

GLHF News

Camp is an unforgettable experience for anyone fortunate enough to participate. Just one week each summer can give you memories that will…

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BioMarin to Narrow Its Commercial Focus for Hemophilia A Gene Therapy

Gene Therapy, Industry News & Research

BioMarin recently announced that they will be changing the scope of their efforts to manufacture and market their gene therapy product ROCTAVIAN.™…

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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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