News

COVID-19: Health and Wellness Update from NHF’s Dr. Leonard Valentino

COVID-19, Industry News & Research

The cautious optimism of May and June with regards to emerging from the pandemic has shifted as we are witnessing a resurgence…

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Spark Provides Trial Updates for Investigational Gene Therapy SPK-8011

Industry News & Research

SPK-8011 is Spark Therapeutics’ investigational gene therapy candidate for hemophilia A. Spark Therapeutics recently announced updates from an ongoing phase 1/2 clinical…

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New Descriptive Study Looks at Bleeding Disorder Camps

Industry News & Research

The study included a number of notable findings relevant to the participation of healthcare providers in bleeding disorder camps (BDCs), adherence to…

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NHF Responds to New CMS Guidance

Industry News & Research

New guidance from the U.S. Department of Health and Human Services encourages states to educate eligible immigrants about Medicaid coverage. In a…

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BioMarin Hemophilia A Clinical Development Program: An Update for the Hemophilia Community

Industry News & Research

BioMarin is pleased to update the community regarding our ongoing gene therapy clinical trial program in hemophilia A. BioMarin’s investigational gene therapy…

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Review Your Health Coverage: Recent Federal Law Lowers Costs, Opens Up New Options

Advocacy & Legislation, Industry News & Research

The American Rescue Plan (ARP), signed into law on March 11, 2021, provides new opportunities to get health insurance coverage, and/or to…

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New Data for Genentech’s Hemlibra (emicizumab-kxwh) Reinforce Safety Profile in People With Hemophilia A

Industry News & Research

Final analysis from the Phase IIIb STASEY study, including data from 193 people with hemophilia A, further support the benefit/risk profile of…

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FDA Places Clinical Hold on Sigilon’s Investigational Hemophilia Therapy

Industry News & Research

Sigilon’s cell-based therapy is designed to carry significant amounts of synthetic DNA material to elicit the production of factor VIII in individuals…

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New Article Offers Scientific Overview of AAV Vectors and Hemophilia Gene Therapy

Industry News & Research

Read about some of the primary considerations relevant to investigational hemophilia gene therapies that employ adeno-associated viral (AAV) vectors. Source: National Hemophilia…

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Wisconsin State Journal: Don’t Let Insurers Undermine Copay Help for Wisconsin Patients

Advocacy & Legislation, Industry News & Research

by: Sen. André Jacque and Rep. Paul Tittl | April 17, 2021 The health and economic impacts of the ongoing pandemic have…

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NHF’s Bleeding Disorders Conference, August 25 – 28, 2021!

Industry News & Research

NHF’s Annual Bleeding Disorders Conference (BDC) is their signature event and highlights their commitment to education. Leading community members and experts on…

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A Message from NHF President and CEO Leonard A. Valentino, M.D. Regarding the Fight Against Racism

Health and Well Being, Industry News & Research

The verdict is an important and significant step forward in the fight against racism, and the violence that it brings to our…

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WFH: Specific Risks of COVID-19 to the Bleeding Disorders Community

COVID-19, Industry News & Research

The COVID-19 Task Force of the World Federation of Hemophilia (WFH) has released a statement on risks of acquiring COVID-19 disease and…

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BioMarin Presents Positive Safety and Efficacy Data for their Hemophilia A Gene Therapy

Industry News & Research

These data were presented by BioMarin at the American Society of Gene & Cell Therapy Virtual Meeting, which was held May 11-14,…

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Gene Therapy Trial Data Suggests Efficacy in the Presence of Antibodies

Industry News & Research

The recent American Society of Gene & Cell Therapy (ASGCT) Virtual Meeting featured updates from the phase III HOPE-B clinical trial of…

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NHF Marks the 40th Anniversary of the HIV Epidemic

Industry News & Research, Living with a Bleeding Disorder

June 3, 2021 – Statement from Nathan Schaefer, Vice President of Public Policy, National Hemophilia Foundation This June marks a painful anniversary…

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NHF Compiles List of 2021 Scholarships! Apply Today!

Health and Well Being, Industry News & Research

Time for an important reminder – “Scholarship season” is now in full swing! NHF’s information service, HANDI, compiles an annual online list…

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Video: Diagnostic Challenges and New VWD Guidelines

Industry News & Research, Living with a Bleeding Disorder

In this video, Robert Sidonio Jr., M.D., discusses the new von Willebrand Disease (VWD) Guidelines and the most significant changes that healthcare…

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NHF Celebrates Women’s Health Month with Series of Webinars Critical to Women and Bleeding Disorders

Health and Well Being, Industry News & Research

We are marking women’s health month with a series of webinars that focus on critical issues for women with bleeding disorders. Our…

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Take the National HTC Patient Satisfaction Survey

Industry News & Research

This national survey is designed to assess patient demographics, their satisfaction with the HTC’s core treatment team, its services, and care processes….

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Study Looks at Neuraxial Anesthesia and Postpartum Complications in Hemophilia

Industry News & Research

Neuraxial anesthesia, a focus of this study, refers to the administration of local anesthetics and analgesia to targeted locations in the spinal…

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Gene Therapy Licensing Agreement Between uniQure and CSL Now in Effect

Industry News & Research

The commercialization and licensing agreement between the two companies went into effect on May 6th. May 7, 2021 uniQure recently announced that…

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New Chief Scientific Officer Joins NHF

Industry News & Research

Kevin Mills, PhD has joined the National Hemophilia Foundation as chief scientific officer. A graduate of University of Colorado Boulder, MIT, and…

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uniQure Announces End of Clinical Hold on Hemophilia B Gene Therapy Program

Industry News & Research

Late last year the FDA put a clinical hold on the program in response to a single trial participant who was diagnosed…

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