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News

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January 4, 2022

Glanzmann’s Thrombasthenia and Bernard-Soulier Syndrome

Industry News & Research, GLHF News

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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January 4, 2022

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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January 4, 2022

Bleeding Disorders in Pop Culture

Health and Well Being, GLHF News

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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December 16, 2021

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

COVID-19 / Coronavirus, 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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December 15, 2021

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

Industry News & Research, Health and Well Being, 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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December 14, 2021

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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December 7, 2021

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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December 7, 2021

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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December 7, 2021

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

Industry News & Research, Health and Well Being, 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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December 7, 2021

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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November 29, 2021

NHF’s Dr. Leonard Valentino Talks COVID-19, Vacccinations and Gratitude

COVID-19 / Coronavirus, 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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November 16, 2021

HFA Action Alert: Tell Congress to permanently secure enhanced Advance Premium Tax Credits passed in the American Rescue Plan Act.

Advocacy & Legislation

Join more than 30 community members from across the country who are holding virtual visits and calls with their senators and representatives…

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November 15, 2021

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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November 15, 2021

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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November 15, 2021

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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November 15, 2021

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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November 10, 2021

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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November 9, 2021

NHF Responds: Gov. Whitmer Signs First Bill Repealing Tampon Tax, Drives Down Costs for Families

Advocacy & Legislation, Health and Well Being

Bill is part of two-bill bipartisan package that will repeal taxes on menstrual products. NHF Statement In Response to New Michigan Law: “The…

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November 9, 2021

NHF Statement on HELP Copays Act

Advocacy & Legislation, Industry News & Research

NHF has led the All Copays Count Coalition in helping support HR 5801. The National Hemophilia Foundation applauds Congressional Representatives Donald McEachin…

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November 9, 2021

NHF Statement on Approval of the Pfizer-BioNTech Vaccine for Children Ages 5-11

Industry News & Research, Health and Well Being, Uncategorized

COVID-19 vaccine for children ages 5-11 receives final approval. “NHF applauds the CDC’s recommendation of the Pfizer-BioNTech COVID-19 vaccine for children 5…

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November 9, 2021

Together We Give! #GivingTuesday is November 30. Donate Today!

GLHF News

In this time of uncertainty, there’s fundamental truth that gives us hope – that together we can do extraordinary things. Over nearly…

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November 9, 2021

Patient-Reported Data Informs New Study on Sexual Health and Hemophilia

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

An understanding of sexual health in people living with hemophilia (PWH), including difficulties with sexual activity and intimacy, has been historically lacking….

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October 28, 2021

The Importance of Saying No

Health and Well Being

by: Lori Jocobwith As I learn to set better boundaries and focus on self-care before I put on my cape to help…

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October 26, 2021

Op-Ed Outlines the Value of Copay Assistance and the Challenges of Copay Accumulator Adjustment Programs

Advocacy & Legislation, GLHF News

A recent op-ed in the Milwaukee Journal Sentinel by Jim Turk, titled Why Wisconsin Lawmakers Need to Protect the Value of Copay…

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