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The Importance of Copay Assistance Protections: Awareness Grows

Industry News & Research, Living with a Bleeding Disorder

…lawmakers are hearing about H.R. 830 from a variety of patient groups. (Copay accumulator adjusters affect people with a range of serious, complex and chronic health conditions, who are united in…

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Inhibitor Risk Paper Informed by Genotyping Project

Industry News & Research

…IX genes in the case of hemophilia A (HA) and hemophilia B respectively. MLOF was a partnership between the hemophilia community, the National Hemophilia Foundation, American Thrombosis and Hemostasis Network…

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Be Your Own Advocate!

Advocacy & Legislation

Accessia Health (formerly PSI) is offering free webinars to help you learn to advocate for your insurance and health needs. Information covered in this video includes insurance terms, medical vs….

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Pain Management for Adults

Living with a Bleeding Disorder, Pain Management

associated with arthritis. “Treating Pain with Medical Marijuana”: This article from the Arthritis Foundation addresses the use of medical marijuana for arthritis and it’s potential benefits and cautions. *HFA strongly…

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Activity Explores Non-Factor Replacement Therapy in Hemophilia Care

Industry News & Research, Living with a Bleeding Disorder

…to register and learn more about the activity, including accreditation details. Please note that registration is free. This program is supported by an independent educational grant from Novo Nordisk. Source: National Bleeding…

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Fear of Needles?

Health and Well Being, Living with a Bleeding Disorder

A phobia to needlesticks is a real thing. Read a great article here about how one father helped his son with hemophilia overcome his fear. Also request a free copy…

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Think Positive!

Health and Well Being, Living with a Bleeding Disorder

…thinking and goal-setting. Before-and-after illustrations highlight the many situations you may face, and how to handle them confidently and effectively. Free to families and patients. S&H applies. Available in paperback…

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Patient Receives First Hemophilia A Gene Therapy Outside a Clinical Trial

Gene Therapy, Industry News & Research

for the treatment of adults with severe hemophilia A without antibodies to adeno-associated virus serotype 5 (AAV5) detected by an FDA-approved diagnostic test. “This is more than a medical breakthrough;…

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Patient Receives First Hemophilia A Gene Therapy Outside a Clinical Trial

GLHF News

…summer for the treatment of adults with severe hemophilia A without antibodies to adeno-associated virus serotype 5 (AAV5) detected by an FDA-approved diagnostic test. “This is more than a medical…

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New publications provide guidance to increase identification of PWBDs

Industry News & Research

…to be overcome in areas such as resource mobilization, awareness-raising, and the need for multistakeholder collaboration and government commitment. Additionally, it recommends the use of a POC, as described above,…

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Medscape Launches Activity for Emergency Department Providers

Industry News & Research

…this activity, participants will: Discuss common complications related to hemophilia Triage and assess hemophilia patients who present to the ED Apply latest recommendations for treating hemophilia patients in the emergency…

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CSL Acquires Hemophilia B Gene Therapy Candidate from uniQure

Gene Therapy, Industry News & Research, Living with a Bleeding Disorder

and moderately severe hemophilia B. Etranacogene dezaparvovec consists of adeno-associated virus serotype 5 (AAV5), which has been demonstrated to be safe and well-tolerated, acting as a delivery vector carrying a…

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BioMarin Releases Trial Updates in Lead Up to WFH Virtual Summit

Industry News & Research

…therapy employs adeno-associated viruses (AAVs) as vectors to carry the genetic codes that prompt the production of the factor VIII (FVIII) protein that is deficient in people with hemophilia A….

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Mental Health:

COVID-19

…Mindy Kaling, Olivia Wilde and many more, the readings are posted Monday, Wednesday, and Friday at 12 pm (1 PM ET). Click here to follow this free series on Youtube!…

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WFH Virtual Summit, June 14-19, 2020: Connecting the Global Bleeding Disorders Community

Industry News & Research

…The WFH Virtual Summit is a series of FREE live and recorded sessions that will allow you to connect with the community and increase your knowledge from the comfort of…

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Ignited Fundraising: Stories for People Hungry for Inspiration

GLHF News

…of your mission-in-action. Join me tomorrow, May 7 for a free webinar at Noon Eastern | 11 AM Central | 9 AM Pacific to see examples of stories that ARE…

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Statement from Len Valentino on COVID-19

COVID-19

…at greater risk for viral infections such as COVID-19. People living with hemophilia and inhibitors have an altered immune system and greater care should be taken to avoid exposures to…

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Common Council approves mask mandate for City of Milwaukee

COVID-19

…covering on any person in an indoor public space, as well as a mask or face covering on any person in an outdoor public space when within six feet of…

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Two Gene Therapy Medscape Activities Recertified

Gene Therapy, Industry News & Research, Living with a Bleeding Disorder

The National Hemophilia Foundation (NHF) is pleased to announce that two educational activities in the “Clinical Advances in Gene Therapy for Hemophilia” series have been recertified, and will therefore be…

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NHF-McMasters Guidelines on ECRI

Industry News & Research

…objective, evidence-based clinical practice guideline content. The website is free to healthcare providers who register. The guideline is a tool to assist practitioners and patients in making decisions about appropriate…

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Give Where You Live for The Red Tie Campaign!

GLHF News

…Great Lakes Hemophilia Foundation. And remember, show your Red Tie Pride and post a picture of yourself online! Be sure to tag us at Great Lakes Hemophilia Foundation. A frame…

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Who Makes the Decision?

Living with a Bleeding Disorder

…is his life, and, like all parents, we hope that he’ll be around for a long time after we’re gone. Bubba views infusions as an inconvenience. We know he secretly…

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You Help People Meet Challenges During Times of Uncertainty

…as traditional educational opportunities. You also help individuals through our Patient Financial Assistance (PFA) program when emergencies arise. For example, at age 52, one of our clients didn’t yet qualify…

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Future Therapies

…hemophilia is continuing albeit at a moderate pace. There are many projects continuing in animal models. Improved long-term expression of the new genes will require the development of better vectors…

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