News

Are Nasal Swabs in At-Home COVID Tests Safe for People with Bleeding Disorders?

COVID-19

by: Michael Hickey How to stay safe from potential testing-related bleeds. It’s 2022 and COVID-19 is, unfortunately, still around. Of course, things…

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Record-Keeping Tips for the Bleeding Disorders Community

Health and Well Being, Living with a Bleeding Disorder

by: Michael Hickey Keeping an accurate treatment log is an essential part of managing a bleeding disorder. Here’s how you can do…

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Statement from Patient Groups in Response to Court Ruling on Cost-Free Coverage of Preventive Health Services

Industry News & Research, Living with a Bleeding Disorder

HFA and 25 other patient groups issued the following statement in response to Wednesday’s court ruling in Braidwood v. Becerra (a lawsuit formerly known…

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Rare Factor X Deficiency Survey Shows Disparity in Care

Industry News & Research

Initial data from the survey were presented at the recent Thrombosis and Hemostasis Summit of North America and NHF’s Bleeding Disorders Conference…

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FDA Grants Priority Review for Sanofi’s BIVV001

Industry News & Research

BIVV001 is a recombinant factor VIII therapy (rFVIII) developed for the prevention of bleeding episodes in hemophilia A patients via once weekly…

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GLHF’s Camp Klotty Pine Welcomed Back Campers in August for Another Successful Year!

GLHF News

On August 8, GLHF’s Camp Klotty Pine welcomed 42 campers from across Wisconsin for an unforgettable week. Each summer, we watch kids…

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von Willebrand Disease (VWD) and Iron Deficiecy – Speaker: Bethany Samuelson, M.D.

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

In this video, Dr. Bethany Samuelson Bannow, of Oregon Health & Science University, discusses the role of iron in the body, the…

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Gene Therapy and Bleeding Disorders: Making Sense of It All

Health and Well Being, Industry News & Research

Gene Therapy is definitely a dominant topic in the bleeding disorders community, with new articles being published regularly. Read some of the…

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How Does the Supreme Court’s Ruling on the Reversal of Roe vs. Wade Impact the Bleeding Disorders Community?

Advocacy & Legislation

There are many questions regarding the affects the June Supreme Court decision could have on the bleeding disorders community – including genetic testing and…

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GLHF Partners with Local Bars and Restaurants to Raise Funds for the Bleeding Disorders Community. Join Us November 9 for Bingo Night at Hamburger Mary’s – and Let Us Know if You Would Like to Sponsor an Event!

GLHF News

GLHF partnered with Just J’s in West Allis for their first Mark Monty Memorial Poker Run on August 14. Riders enjoyed breakfast…

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Supreme Court Decision and Genetic Testing

Health and Well Being, Industry News & Research

by: Laurie Kelley Thoughts on how the Supreme Court decision on abortion might affect genetic testing outcomes. Read more here. The recent…

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Does Gene Therapy Face Uphill Battle? Gene Therapies for Hemophilia Treatment Will Face Strong Market Headwinds, Research Suggests

Industry News & Research

Solid market position of Hemlibra and strong prescriber interest in RNAi and TFPI treatment options, combined with patient concerns regarding gene therapies,…

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Get Ready for the Hemocraft ™ Challenge! Loosely Based off of the Hit Video Game Minecraft, Hemocraft Teaches Kids the Importance of Staying Prepared and Sticking to a Treatment Plan!

Living with a Bleeding Disorder

What is Hemocraft ™? In partnership with the Entrepreneurial Game Studio at Drexel University, the National Hemophilia Foundation, and members of the…

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Gallery Captures Hemophilia Lives: Photographer Rankin Captures The Humanity in People with Hemophilia

Health and Well Being, Living with a Bleeding Disorder

“Portraits of Progress” is a project in partnership with CSL Behring that charted 60 years in the fight against hemophilia, and that…

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Gene Therapy and Bleeding Disorders: Where Are We Now, and What’s on the Horizon?

Industry News & Research

The National Hemophilia Foundation’s 16th Workshop on Novel Technologies and Gene Transfer for Hemophilia, held in November, addressed these questions and more….

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Hemophilia B— An Excellent Candidate for Gene Therapy

Industry News & Research

Current hemophilia B treatments offer strong protection from bleeds, but impact patient lifestyle and require consistent infusions to keep protection levels high.1…

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Making Sense of It All – Gene Therapy

Industry News & Research

What exactly is a gene? What happens when genes mutate? And can gene therapy research help solve problems related to mutations? Learn…

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Paper Features Q&A Resource on Shared Decision Making and Gene Therapy

Industry News & Research

The Q&A resource highlighted here is meant to encompass all stages of a patient’s decision making journey in gene therapy. As investigational…

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BioMarin Presents Abstract on Vector DNA Transmission Risk at ISTH

Industry News & Research

The focus of the abstract is the investigational hemophilia A gene therapy, valoctocogene roxaparvovec. BioMarin recently shared findings from a phase 3…

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The High Cost of Hemophilia

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

Just one bleed in people with severe hemophilia A receiving prophylaxis has the potential to negatively affect health-related quality of life, and raise…

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Prophylactic Therapy for Glanzmann Thrombasthenia Moves Towards Clinical Trials

Industry News & Research

Glanzmann Thrombasthenia is an ultra-rare inherited bleeding disorder that is characterized by poorly functioning platelets. The recent Congress of the International Society…

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Sanofi Provides Fitusiran Trial Updates at ISTH

Industry News & Research

These updates were presented during the International Society on Thrombosis and Haemostasis (ISTH) Congress in London. Sanofi recently shared new clinical trial…

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NHF Addresses Potential Contraception Bans

Advocacy & Legislation

A statement from the National Hemophilia Foundation. Abortion and contraception can both be critical components of an individual’s health care journey. However,…

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Read the HFA’s Latest Legislative Updates – State of the States July 2022

Advocacy & Legislation

Read the Hemophila Federation of America’s (HFA) latest legislative update – State of the States, July 2022. This update includes information on…

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