News

NHF’s Dr. Leonard Valentino Addresses COVID-19, Vaccines and Collaborative Progress

COVID-19, Industry News & Research

You have been reaching out to us with your questions and concerns about the COVID-19 vaccines and we are grateful that you…

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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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How the American Rescue Plan Can Affect Your Healthcare Coverage

COVID-19

The new law lowers costs and opens up new options to get health insurance coverage. The American Rescue Plan (ARP), signed into…

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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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Stay Informed and Take Action About Current Legislative Issues. Sign up for Phone2Action Today!

GLHF News

Phone2Action is a new software system that allows GLHF to connect with you regarding our state advocacy work. It gives us the…

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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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In Celebration of World Hemophilia Day, Join GLHF for a Friendly Game on GooseChase, April 12-18! 

Advocacy & Legislation, GLHF News

This year, in celebration of World Hemophilia Day, Saturday, April 17, we’re challenging the bleeding disorders community to a friendly game of…

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Herd Immunity Isn’t Going to Happen

COVID-19

Scientists – including Dr. Fauci – are estimating that around 90% of the US population would need to be either recovered from…

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COVID-19 Update: Vaccinations

COVID-19

CDC COVID Data Tracker: To date, there have been 27,879,604 cases reported in the US resulting in nearly 500,000 deaths of Americans!…

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NHF: Vaccination and COVID-19 Update

COVID-19

by: Dr. Leonard Valentino, Chief Executive Officer, National Hemophilia Foundation So, where are we with vaccines for COVID-19? Well, let’s first start…

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Should People with Hemophilia Get the COVID-19 Vaccine?

COVID-19

Answers for the bleeding disorders community to frequently asked questions about the vaccine. Read more. Source: National Hemophilia Foundation, HemaWare.

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Infusing the World with Knowledge

Advocacy & Legislation

Learn about the power of advocacy in the bleeding disorders community. Read more. Source: National Hemophilia Foundation, HemaWare.  

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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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as i see it: Patient Education Through Social Media in the COVID Era

COVID-19, Health and Well Being, Living with a Bleeding Disorder

by: Laurence Woollard, Hemophilia Influencer © PEN (Parent Empowerment Newsletter), LA Kelley Communications, Inc. The unparalleled, seismic societal shifts over the past…

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Video: COVID-19: Mitigation, Treatment and Vaccines

COVID-19, Health and Well Being

In this video, Dr. Phillip Jacobson of Rush University discusses vaccine administration and distribution, community risks, and vaccine delivery mechanisms. Watch Video.

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COVID-19 Vaccines and Bleeding Disorders: FAQs and Guidance

COVID-19, Health and Well Being, Living with a Bleeding Disorder

COVID-19 Vaccines and Bleeding Disorders: FAQs These FAQs were created in anticipation of questions or concerns individuals with bleeding disorders may have…

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Join us on February 13-14 for a special edition of Milwaukee’s Best Bloody…To Go!

GLHF News

Join us on February 13-14 for a special edition of Milwaukee’s Best Bloody…To Go! Keep an eye on your email and social…

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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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COVID-19: Latest News and Updates

COVID-19

What You May Feel After Getting the COVID-19 Vaccine It’s important that people understand that there may be some side effects after…

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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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