News

Takeda Announces Approval of Prophylactic Indication for VWD Therapy

Industry News & Research

Takeda recently announced that the U.S. Food and Drug Administration (FDA) has approved VONVENDI® for routine prophylaxis to reduce the frequency of…

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Update from BioMarin Phase 3 Trial

Industry News & Research

BioMarin’s investigational gene therapy for hemophilia A has not been approved for use; clinical trials are ongoing. Please click this link to read…

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Remembering Val Bias

GLHF News, Industry News & Research

A Statement from the National Hemophilia Foundation: Like many reading this note, NHF is profoundly heartbroken over the recent passing of Val…

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The FDA’s Office of Patient Affairs Shares Highlights from 2021 Programs and Encourages you to Participate in their Upcoming 2022 Activities.

Advocacy & Legislation, COVID-19, Industry News & Research

The United States Food and Drug Administration’s Office of Patient Affairs is sharing recent highlights with the public from 2021 and is…

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Sigilon Announces a Priority Shift in Light of Clinical Trial Setbacks

Industry News & Research

The phase 1/2 trial of SIG-001 for hemophilia A has been on an FDA clinical hold since July 2021. Sigilon Therapeutics recently…

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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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Remembering Val Bias: A Note from Dr. Glenn Pierce

GLHF News, Industry News & Research

Dr. Glenn Pierce reflects on the passing of former NHF CEO, Val Bias. Val and I first got to know one another…

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National Hemophilia Foundation Mourns the Loss of Longtime CEO, Val Bias

GLHF News, Industry News & Research

Former CEO spent decades inspiring the inheritable blood disorders community. NHF is deeply saddened to announce that former NHF CEO and community…

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All Copays Count Coalition Statement on Draft 2023 CMS Notice of Benefit and Payment Parameters

Advocacy & Legislation, Industry News & Research

The latest breaking news from the All Copays Count Coalition. In response to additional rulemaking for the Centers for Medicare & Medicaid…

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Gene Therapy: Where Do We Go From Here?

Industry News & Research

In this video, Tammuella Chrisentery-Singleton, M.D., Chief of Hematology for the Louisiana Center for Advanced Medicine, gives an overview of gene therapy…

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Glanzmann’s Thrombasthenia and Bernard-Soulier Syndrome

GLHF News, Industry News & Research

Here’s what we know about these ultra-rare platelet disorders. Most bleeding disorders are relatively rare. Even the most common bleeding disorder, von…

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National Patient & Caregiver Survey Shows that COVID-19 Has Exacerbated Treatment Affordability Challenges & Health Inequities for Vulnerable Americans

COVID-19, Industry News & Research

The National Hemophilia Foundation (NHF) today, in conjunction with the American Kidney Fund (AKF), Arthritis Foundation, and American Autoimmune Related Diseases Association (AARDA), released findings from…

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

Health and Well Being, Industry News & Research, 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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uniQure and CSL Behring Announce Primary Endpoint Achieved in HOPE-B Pivotal Trial of Etranacogene Dezaparvovec Gene Therapy in Patients with Hemophilia B

Industry News & Research

Paper Highlights: Largest gene therapy study in hemophilia B achieved primary endpoint of non-inferiority in annualized bleeding rate after stable Factor IX…

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Spark Announces Multiyear Data Update for Investigational Gene Therapy

Industry News & Research

This data was drawn from a phase 1/2 clinical trial of SPK-8011, Spark’s investigational gene therapy for hemophilia A. Spark Therapeutics announced…

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Pfizer/Sangamo Hemophilia A Gene Therapy Program on Clinical Hold

Industry News & Research

On Tuesday, November 4, the U.S. Food and Drug Administration (FDA) placed the Pfizer/Sangamo hemophilia A gene therapy program, including the pivotal…

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

Health and Well Being, Industry News & Research, 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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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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NHF’s Dr. Leonard Valentino Talks COVID-19, Vacccinations and Gratitude

COVID-19, Industry News & Research

Life during the time of COVID-19 Can you describe your life during the pandemic … in only six words? Well, a group…

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NHF’s National Youth Leadership Institute (NYLI) is Accepting Applications Until Dec. 15 for 2022. Apply Today!

Industry News & Research

Are you between the ages of 18-22 and interested in a leadership program made just for you? Or do you know a…

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Ask A Social Worker! NHF’s HemAware Column Offers Advice for Community Members

Health and Well Being, Industry News & Research

Do you have questions about caregiving, aging, insurance, relationships, or other issues impacted by your status as a community member? NHF can…

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Descriptive Study Looks at HTC Social Worker Roles

Industry News & Research

While social workers have functioned as essential members of the multidisciplinary care teams at the core of U.S. hemophilia treatment center (HTC)…

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Ask Your Elected Official to Make All Copays Count!

Advocacy & Legislation, Industry News & Research

The National Hemophilia Foundation helped spearhead new legislation that aims to support the more than 133 million Americans living with a chronic…

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All Copays Count Coalition Applauds House Introduction of Help Ensure Lower Patient Copays Act

Advocacy & Legislation, Industry News & Research

Legislation Introduced by Representatives McEachin and Davis Would Eliminate Harmful and Misleading Health Plan Pricing Schemes and Protect Vulnerable Patients. The All…

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