News

Learn More About the COVID-19 Vaccines and ITP

COVID-19, Industry News & Research

The Platelet Disorder Support Association recently recorded a patient education webinar on the new COVID-19 vaccines and immune thrombocytopenic purpura (ITP) As…

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uniQure Announces Findings from HCC Case Investigation in HOPE-B Trial for Gene Therapy

Industry News & Research

The focus of the HOPE-B trial is etranacogene dezaparvovec, uniQure’s investigational gene therapy candidate for individuals with severe and moderately severe hemophilia…

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The Impact of Copay Accumulator Adjuster Programs on Patients

Industry News & Research

In the age of high deductibles and patient out-of-pocket expenditures, more and more people depend on copay assistance to afford their life-saving…

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Spark Announces Preliminary Data from Investigational Gene Therapy Trial

Industry News & Research

Spark Therapeutics announced preliminary data from part one of their ongoing phase 1/2 open-label, non-randomized, dose-finding study of SPK-8016, the company’s investigational…

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Sanofi Revises Fitusiran Dosing Regimen to Mitigate Risk

Industry News & Research

Source: Joint statement from the European Hemophilia Consortium, the World Federation of Hemophilia, and the National Hemophilia Foundation Fitusiran update following EAHAD…

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Video: The State of Copay Accumulator Adjustment

Industry News & Research

In this video, Kollet Koulianos from NHF’s Payer Relations team explains the significance of copay Accumulator Adjustment programs. Watch now. Source: National…

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19 Recommendations for Better Diagnosis and Treatment of VWD

Industry News & Research

The guidelines were developed by panels of 32 individuals, including hematologists, people living with VWD, and scientists with expertise in guideline development…

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BioMarin Announces Positive Phase 3 Study Data for Valoctocogene Roxaparvovec

Industry News & Research

The phase 3 trial currently includes 134 participants with hemophilia A, all of whom have received a single dose of the gene…

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President Trump Signs FY21 Federal Funding Bill Including Hemophilia SNF Access Act and Funding for Bleeding Disorders Programs

Advocacy & Legislation, COVID-19, Health and Well Being, Industry News & Research, Living with a Bleeding Disorder

The Consolidated Omnibus Appropriations Bill, 2021, signed into law by President Trump on December 27, 2020 included a number of provisions important…

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NHF Offers Weekly Webinars Beginning Jan. 13 – What You Can Expect From NHF in the Upcoming Year

Industry News & Research

The National Hemophilia Foundation (NHF) will be hosting a series of weekly webinars every Wednesday at 1 p.m. CST (2 p.m. ET) beginning…

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Marijuana and CBD for Chronic Pain: What You Need to Know

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

Learn about the potential benefits and risks, along with what to look out for when evaluating products. Read more hemaware.org

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COVID-19: Latest News & Updates

COVID-19, Health and Well Being, Industry News & Research

Milwaukee County Updates to the COVID-19 Dashboard Since the pandemic began in March, the Milwaukee County COVID-19 dashboard has provided residents with…

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Roundup of Drug Pricing Executive Orders

Advocacy & Legislation, Industry News & Research

President Trump has issued a number of executive orders on drug pricing. We show which ones could affect people with bleeding disorders….

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CDC Recommends Healthcare Workers, Nursing Homes First in Line for COVID-19 Vaccine

COVID-19, Industry News & Research

The CDC is recommending that healthcare workers and residents of nursing homes be the first to receive the new coronavirus vaccines. The…

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Comments From NHF’s Dr. Leonard Valentino About the COVID-19 Vaccine

COVID-19, Industry News & Research

The makers of two coronavirus vaccines, Pfizer and its German partner BioNTech, and Massachusetts-based Moderna, have applied to the FDA for emergency…

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COVID-19: Latest News and Updates

COVID-19, Industry News & Research

Leaders of Wisconsin’s Two Medical Schools Urge Everyone to Take Action During the COVID-19 Outbreak. Med School Leaders Urge Public to Stay…

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Patient Advocacy Organizations Release Blueprint to Protect Access to Care

Advocacy & Legislation, Industry News & Research

Thirty three organizations, including NHF, urge elected officials to ensure all people living in the US have access to adequate and affordable health…

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Global Dosing Hold in Fitusiran Trials Initiated by Sanofi Genzyme to Investigate New Adverse Events

Industry News & Research

A joint statement of the World Federation of Hemophilia (WFH), European Haemophilia Consortium (EHC) and National Hemophilia Foundation (NHF). The WFH, EHC…

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Patient Groups Urge U.S. Supreme Court to Prioritize Patients and Uphold Health Care Law

Advocacy & Legislation, Industry News & Research

Twenty patient groups representing millions of Americans with pre-existing conditions are urging the U.S. Supreme Court to prioritize patient protections, including those…

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Access the World’s Largest Hemophilia Repository

Industry News & Research

Note: The My Life, Our Future Research Repository includes the largest bank of genomic and phenotypic data about people with hemophilia. While…

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Webinar Creates Opportunity to Learn More About Rare Platelet and Bleeding Disorders!

Industry News & Research

Note: This webinar explores the diagnosis and clinical management of patients with rare inherited bleeding and platelet disorders. The National Hemophilia Foundation…

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Pfizer Announces First Participant Dosed Phase 3 Study of Marstacimab

Industry News & Research

Note: Marstacimab is a laboratory-engineered monoclonal antibody developed to treat hemophilia A and B patients, with or without inhibitors. Pfizer recently announced…

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Milwaukee Area Physicians Appeal to the Community

COVID-19, Industry News & Research

Our local physicians are here to help when we need it most. Now they’re asking us to do our part in preventing…

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uniQure Announces Positive Top-Line Data from the HOPE-B Pivotal Trial of Etranacogene Dezaparvovec Gene Therapy in Patients with Hemophilia B

Industry News & Research

uniQure N.V. (NASDAQ: QURE), a leading gene therapy company advancing transformative therapies for patients with severe medical needs, today announced positive top-line…

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