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Town Hall Webinar - Ask the Experts: Coping During COVID-19
This webinar covers updates on how the COVID-19 pandemic is affecting the bleeding disorders community and what people with bleeding disorders need to know about the coronavirus.Read more about Town...
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Investigators Look at Hematuria as Hypertension Risk Factor in Hemophilia...
Researchers for this observational study focused on macroscopic hematuria, hemophilia, and potential links to family history of hypertension.Read more about Investigators Look at Hematuria as...
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NHF's Board of Directors Meeting
The National Hemophilia Foundation will be holding our quarterly Board of Directors meeting on Thursday, May 28th at 7:00 PM EDT.Read more about NHF's Board of Directors Meeting
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Health and Wellness Update #9 from Dr. Valentino
Information and techniques you and your family can use to stay healthy during the COVID-19 pandemic.Read more about Health and Wellness Update #9 from Dr. Valentino
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Statement from Novo Nordisk on Rebinyn and COVID-19
BioMarin is working with health authorities and governmental regulatory agencies globally, to ensure the safety of all those involved in their clinical trial program, including enrolled participants,...
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Establishing a New Paradigm to Realize Health Equity in Hemophilia
The authors of this paper assert that an updated treatment model is needed globally for people with hemophilia, one that ulitmately strives for health equity for all.Read more about Establishing a New...
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Accredited Gene Therapy Educational Opportunities Available Online Now
These continuing education activities are intended for hematologists, pediatricians, and other healthcare professionals who manage patients with hemophilia.Read more about Accredited Gene Therapy...
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Town Hall Webinar - Inhibitors: Coping During COVID-19
In this webinar, Drs. Tammuella Singleton and Tyler Buckner explain what you need to know, and what precautions you need to take if you have hemophilia with an inhibitor.Read more about Town Hall...
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COVID-19 Webinars and Newsletter Update
NHF will continue to provide information and resources to the bleeding disorder community on the COVID-19 pandemic.Read more about COVID-19 Webinars and Newsletter Update
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We Stand With You
Discrimination is the greatest threat to a community built on belonging and acceptance. We are committed to being part of the solution.Read more about We Stand With You
View ArticleBioMarin Releases Trial Updates in Lead Up to WFH Virtual Summit
The updated trial data from BioMarin have been submitted as a late-breaking abstract to the upcoming World Federation of Hemophilia (WFH) Virtual Summit to be held June 14-19, 2020.Read more about...
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COVID-19 Assistance Programs
Many of the charitable organizations you may be familiar also have COVID-19 specific funds.Read more about COVID-19 Assistance Programs
View ArticleHemophilia History the Focus of New Partners Modules
These activities are designed for clinical staff including nurses, social workers, physical therapists, pharmacists, and other multidisciplinary providers involved in the management of persons with...
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Town Hall Webinar - Pain Management: Coping During COVID-19
This webinar will cover pain in the bleeding disorder community in the context of the COVID pandemic.Read more about Town Hall Webinar - Pain Management: Coping During COVID-19
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New Partners Module Explores Home Treatment Logs
Healthcare providers who complete the activity will learn about the important role of log-keeping for the home treatment of hemophilia patients and much more.Read more about New Partners Module...
View ArticleSanofi and Sobi Make Additional Factor Donation to Aid Program
The factor product donation made by the two companies is in support of the World Federation of Hemophilia's Humanitarian Aid Program.Read more about Sanofi and Sobi Make Additional Factor Donation to...
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CSL Acquires Hemophilia B Gene Therapy Candidate from uniQure
Pending regulatory clearance, CSL Behring would acquire exclusive global license rights from uniQure to commercialize etranacogene dezaparvovec, otherwise known as AMT-061. Read more about CSL Acquires...
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Two Deaths Reported in AAV-Based Gene Therapy Trials for Rare Muscle Disorder
NHF has learned of the recent death of a patient who had been participating in a gene therapy clinical trial for a rare muscle disorder known as X-Linked Myotubular Myopathy.Read more about Two Deaths...
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Town Hall Webinar - Anger Happens: Coping During COVID-19
Christi Humphrey, LCSW of Hemophilia of Georgia and Jhon Velasco, MA of NHF discuss the principles of anger and how it works in/through the body.Read more about Town Hall Webinar - Anger Happens:...
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Spark Presents Gene Therapy Trial Updates at ISTH Virtual Congress
Spark's investigational hemophilia A gene therapy, administered via a one-time intravenous infusion, is designed to trigger the production of therapeutic levels of factor VIII via the liver cells.Read...
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