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The Importance of Copay Assistance Protections: Awareness Grows
Industry News & Research, Living with a Bleeding Disorder
…launch. House Republicans announced that they are launching an investigation into companies that manage drug benefits (PBMs) – and what role those companies play in increasing drug costs and limiting…
Common Council approves mask mandate for City of Milwaukee
COVID-19
…ask the health department to implement a mask policy if it were to fall short in the Common Council. During the Monday session, the Common Council also unanimously passed a…
Vector Biology and Hemophilia Gene Therapy the Focus of Review
Industry News & Research
A new review article, The Intersection of Vector Biology, Gene Therapy and Hemophilia, was published recently in the journal Research Practice in Thrombosis & Haemostasis (RPTH). It provides a comprehensive…
Sanofi Provides Fitusiran Trial Updates at ISTH
Industry News & Research
…results when fitusiran was compared to previous prophylactic therapy. According to a Sanofi press release, the overall median annualized bleeding rate (ABR) was 0.0 for fitusiran prophylaxis, compared to a…
Sanofi Provides Fitusiran Trial Updates at ISTH
Industry News & Research
…results when fitusiran was compared to previous prophylactic therapy. According to a Sanofi press release, the overall median annualized bleeding rate (ABR) was 0.0 for fitusiran prophylaxis, compared to a…
Inhibitor Risk Paper Informed by Genotyping Project
Industry News & Research
…sequence data deposited into the MLOF Research Repository. Investigators could apply for access to the database to support their research, with acceptance contingent upon their ability to demonstrate both scientific…
CSL Acquires Hemophilia B Gene Therapy Candidate from uniQure
Gene Therapy, Industry News & Research, Living with a Bleeding Disorder
…the global bleeding disorders community, we are well positioned to maximize the potential benefit of this therapy.” “We are thrilled to enter into this commercialization and license agreement with CSL…
NHF/HFA Seek Feedback on Product Safety and Communication
Industry News & Research
…the summit, which is now available for public commentary. The issues discussed at the summit, including current drug safety standards and communication to the community, are of primary importance to…
Origins of Pharmacies
Health and Well Being, Living with a Bleeding Disorder
…medicine in the west. Clerics and laymen, and Christians and Muslims met at this school which was open to everyone—even women! Schola Medica Salernitana Source: Laurie Kelley, Communique’, August edition…
Let’s Talk: Mental Health – Join us Sunday, January 31 at 11 a.m.! Register Today!
GLHF News, Health and Well Being
…Too’s Founder, Debbie de la Riva. This 40 minute film will take you on an immersive journey through the lives of five members of the U.S. bleeding disorders community, as…
The Unite for Bleeding Disorders Walk is September 25! Learn More and Register Today!
GLHF News
…going on and how you can get involved today! Register Today! Registration is open for the 2021 Unite Walk and can be completed HERE. Get A Professional Team Photo Taken!…
Start the Conversation: From Patient to Physician
Health and Well Being, Living with a Bleeding Disorder
…regular blood transfusions with blood donated by blood donors. One of the consequences and one of the complications of thalassemia is that with all these repeated blood transfusions comes a…
Parents in the Bleeding Disorders Community Share Their Best Advice
Health and Well Being, Living with a Bleeding Disorder
…school. Go in calmly and explain the situation. When you’re comfortable, they’re comfortable. It helps defuse the panic they feel when they hear “bleeding disorder.” I’m a teacher, so I…
Green Bay’s Best Bloody
Get DetailsJoin us for our 3rd annual Green Bay's Best Bloody!...
WFH Virtual Summit, June 14-19, 2020: Connecting the Global Bleeding Disorders Community
Industry News & Research
…disorders community together in the name of Treatment for All. This commitment is especially important during the COVID-19 crisis. In June 2020, they will be bringing our community together virtually….
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…
Learn More About the COVID-19 Vaccines and ITP
COVID-19, Industry News & Research
…have been immunized against COVID-19. Visit the PDSA website to learn more and to watch the webinar. The session COVID-19 & ITP: Viruses and Vaccines – How They Can Affect…
Wisconsin Bleeding Disorders Conference
Get DetailsRegister here for before May 5, 2024! Each year Great...
BioMarin to Narrow Its Commercial Focus for Hemophilia A Gene Therapy
Gene Therapy, Industry News & Research
…2023 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. In a new press release the company…
Supreme Court Decision and Genetic Testing
Health and Well Being, Industry News & Research
…had me thinking about genetic testing and hemophilia. I recall that when I decided to have another child, following my first who had hemophilia, doctors were pushing for genetic testing….
What You Should Know About Hematomas
Health and Well Being, Living with a Bleeding Disorder
…diagnosed through an imaging test such as a CT scan or MRI. What Are the Differences Between Bruises and Hematomas? Bruises develop when small blood vessels are injured and leak…
Gene Therapy Trial Data Suggests Efficacy in the Presence of Antibodies
Industry News & Research
…5th uniQure and CSL Behring entered into a commercialization and license agreement providing CSL Behring exclusive global commercialization rights to etranacogene dezaparvovec. Source: uniQure press release dated May 13, 2021…
HANDI Highlights Back-to-School Resources
Health and Well Being, Living with a Bleeding Disorder
…videos, publications, and expert recommendations from hemophilia treatment center social workers. For those new to HANDI Highlights, it is a monthly communication designed to connect the bleeding disorders community with…
HANDI Highlights Resources on Pain Management
Health and Well Being, Living with a Bleeding Disorder, Pain Management
…when it comes to addressing issues of pain. This month, HANDI has chosen to feature several resources on the assessment and treatment of pain. NBDF’s July/August HANDI Highlights includes links…