News

GLHF Celebrates the 10th Anniversary of Milwaukee’s Best Bloody on April 24! Help us Celebrate, Raise Funds for the Bleeding Disorders Community and Vote for your Favorite Bloody Mary! 

GLHF News

In case you missed it, Milwaukee’s Best Bloody is now scheduled for Sunday April 24 at the Italian Community Center. And this…

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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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Copay Accumulator Adjustor Programs (CAAP)

Advocacy & Legislation

Copay Accumulator Adjustor Programs (CAAPs) are a strategy used by insurers to redirect the value of manufacturer copay assistance – which is…

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Cell Therapy Hits a Stumbling Block

Industry News & Research

Cell therapy is a fascinating approach to treat hemophilia. But recently the clinical trials hit a stumbling block. What happened? Read more…

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Meet MASAC’s New Chair: Dr. Amy Dunn

Industry News & Research

Dunn looks to diversity and advocacy as the incoming head of MASAC. One patient changed Dr. Amy Dunn’s entire career in her…

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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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Co-pay Accumulator Policies Hurt Patients. There’s a Simple Solution.

Advocacy & Legislation

by: Kollet Koulianos and Amy NilesV This piece is a joint effort by Amy Niles, Executive Vice President at the PAN Foundation,…

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GLHF Met Virtually with Elected Officials on Wisconsin Legislative Day, January 26

GLHF News

Thank you to all of the state representatives and legislators who met with GLHF advocates for Wisconsin Legislative Day on January 26! Constituents…

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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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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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Bleeding Disorders in Pop Culture

GLHF News, Health and Well Being

A roundup of films, TV shows and plays that have featured hemophilia and other bleeding disorders. Having a rare disease like hemophilia…

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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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