News

BioMarin Receives Conditional Approval in Europe for Gene Therapy

Industry News & Research

The European Commission granted conditional approval to BioMarin’s Hemophilia A gene therapy Valoctocogene Roxaparvovec which will be known as Roctavian. With this…

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Additional Health Risks for Men with Hemophilia

Uncategorized

Diabetes and infection with human immunodeficiency virus (HIV) increase the risk of high blood pressure (hypertension) among men with hemophilia, a U.S. study…

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New Document to Help Residential Substance Use Disorder Placement for Individuals with Bleeding Disorders

Health and Well Being, Living with a Bleeding Disorder

The document includes best practices for HTC providers in accessing residential substance use disorder treatment Historically, many residential substance use disorder (SUD)…

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Continued Conversation on the State of Access to Women’s Health Care

Advocacy & Legislation, Health and Well Being

Recent changes in access to women and girls’ health care are likely to have detrimental effects for the blood and bleeding disorders…

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Open Enrollment for 2023 Health Insurance is Underway!

Advocacy & Legislation, Health and Well Being

Open enrollment for 2023 health insurance programs has started! The Hemophilia Federation of America (HFA) offers tips for navigating the open enrollment…

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GLHF Adds New Resources to Website

GLHF News

GLHF recently added resources to its website for pain management and women with bleeding disorders, as well as the World Federation of…

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Together Again! GLHF’s Unite Walk Was a Day of Community Celebration, Family, Fun and Raising Funds for the Bleeding Disorders Community of WI!

GLHF News

“I walk so that I can be around other people who are like me,” said one young Unite for Bleeding Disorders Walk…

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Be Your Own Advocate!

Advocacy & Legislation

Accessia Health (formerly PSI) is offering free webinars to help you learn to advocate for your insurance and health needs. Information covered…

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Does Hemophilia Mean Brittle Bones?

Health and Well Being, Living with a Bleeding Disorder

by: Paul Clement Many studies have linked having hemophilia to a significantly increased risk of developing osteoporosis, or “holey bones” (osteo means “bone”…

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NHF Calls on CMS to Address Copay Accumulator Adjustors in the 2024 Notice of Benefit and Payment Parameters

Advocacy & Legislation, Industry News & Research

In early October, NHF joined members of The All Copays Count Coalition (ACCC), sending a letter signed by 73 leading patient advocacy and…

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Recruitment Reopened for Phase 3 AFFINE Gene Therapy Trial

Industry News & Research

This trial is evaluating the efficacy and safety of a single infusion of an investigational gene therapy in individuals with moderately severe…

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BioMarin Shares Community Update for Valoctocogene Roxaparvovec

Industry News & Research

Biomarin recently provided an “Update for the Hemophilia Community,” on the ongoing clinical trial program for its investigational hemophilia A gene therapy,…

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Pain Management for Adults

Living with a Bleeding Disorder, Uncategorized

Pain is a serious medical concern in America.  For those with a bleeding disorder, pain as a result of a bleeding episode…

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Ask a Social Worker: How Can I Convince Someone to Seek Mental Health Treatment?

Health and Well Being

Advice for family members on how to bring up mental health treatment with loved ones. Ask a Social Worker is a monthly…

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Comprehensive Pain Management: The Old and the New

Health and Well Being, Living with a Bleeding Disorder

In this video, pain management specialist, Dr. Kim Mauer of Oregon Health and Science University, provides an overview of current treatments available…

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

COVID-19 / Coronavirus

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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