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Wisconsin State Journal: Don’t Let Insurers Undermine Copay Help for Wisconsin Patients

Advocacy & Legislation, Industry News & Research

…One study found that more than 40% of patients abandoned their prescriptions at the counter when their out-of-pockets costs reached between $75 and $125. The same study found that when…

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FDA Places Clinical Hold on Sigilon’s Investigational Hemophilia Therapy

Industry News & Research

…will continue to be followed per study protocol, as the company continues to investigate the SAE. “Patient safety is our top priority, and we are encouraged that the patient is…

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Four Reasons to Establish Care at a Hemophilia Treatment Center

Health and Well Being, Living with a Bleeding Disorder

…40% less likely to die of a hemophilia-related complication compared with those who did not receive care at an HTC. Similarly, a separate study by CDC researchers revealed that people…

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Honoring the Legacy of Dr. Charles Drew

GLHF News, Industry News & Research

…with that. And some of them weren’t comfortable with that. When he finished his degree, he had an idea of what he wanted to do, which was to study blood…

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The High Cost of Hemophilia

Advocacy & Legislation, Health and Well Being, Industry News & Research

and direct costs in adults with severe haemophilia A: Secondary analyses from the CHESS study,” published in Haemophilia. Read more. Source: The Communiqué – August 2022, LA Kelley Communications, Inc….

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FDA Grants Priority Review for Sanofi’s BIVV001

Industry News & Research

…According to a new Sanofi press release, the study encompassed two parallel treatment arms — the prophylaxis Arm A in which patients who had received prior factor VIII prophylaxis were…

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Recruitment Reopened for Phase 3 AFFINE Gene Therapy Trial

Industry News & Research

…announced that recruitment has re-opened for the phase 3 AFFINE study for the investigational gene therapy giroctocogene fitelparvovec. This clinical study is evaluating the efficacy and safety of a single…

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Pfizer Announces Trial Updates for Investigational Hemophilia Gene Therapy

Industry News & Research

…IX (FIX) coagulation protein. A primary endpoint of the study, and key measure of the therapy’s efficacy, is annualized bleeding rate (ABR). Investigators compared (ABR) of participants post-fidanacogene elaparvovec infusion…

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uniQure Announces Published Trial Results for Approved Gene Therapy

Industry News & Research

…said Dr. Steven Pipe, Professor and the Laurence A. Boxer Research Professor of Pediatrics and Professor of Pathology at the University of Michigan and lead investigator of the HOPE-B study….

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BioMarin Update: FDA Extends PDUFA Target Action Date to June 30, 2023

Industry News & Research

…2023. The company had previously communicated that this data submission could be qualified as a Major Amendment.  The Phase 3 study, which included 134 participants, is the longest and largest…

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The Low Cost of Being Female with a Bleeding Disorder?

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

…of patients with hemophilia A and hemophilia A carriers in the United States: Demographics, clinical characteristics and costs,” in Haemophilia. Read here. Source: LA Kelley Communications, Inc., Communiqué May Edition…

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Sanofi Announces Data Showing Effective Bleed Protection in Children with Severe Hemophilia A

Industry News & Research

Pivotal data from the Phase 3 XTEND-Kids study evaluating ALTUVIIIO™ [Antihemophilic Factor (Recombinant), Fc-VWF-XTEN Fusion Protein] once-weekly prophylaxis, a factor VIII replacement therapy, in previously treated patients younger than 12…

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Hemophilia B Gene Therapy Trial Data Published

Industry News & Research

…The report includes results from a “post-hoc” analysis of safety and efficacy data. Post-hoc study refers to a subsequent analysis of data from an earlier study. In this case, investigators…

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FDA Approval Includes Full ALTUVIIIO™ Pediatric Trial Results

Industry News & Research

…thrombotic events were reported. While no inhibitors were detected in the XTEND-Kids study or reported in post-market surveillance to date, the company notes that the formation of inhibitors and allergic…

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Medical Disclaimer

…course of treatment. All information and content on our website is protected by copyright. All rights are reserved. Users are prohibited from modifying, copying, distributing, transmitting, displaying, publishing, selling, licensing,…

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Hemophilia Treatment Centers

…the Centers for Disease Control and Prevention’s (CDC) website. HTCs in Region V-West and Northern States include: Wisconsin Versiti Comprehensive Center for Bleeding Disorders | Milwaukee, WI Gundersen Lutheran |…

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Poinsettia and Wreath Sale Discontinued

GLHF News

…The net revenue from this sale continued on a steady decline as compared to the costs required, making it clear that we needed to focus our efforts in other directions….

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Camp Klotty Pine Celebrates Five Successful Years of Service to the Bleeding Disorders Community

GLHF News

…thank them for helping make camp possible over the last five years,” said Karin Koppen, Director of Camp and Community Outreach. “It included donors, staff and other partners who don’t…

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The 2019 Unite for Bleeding Disorders Walk is September 28. Start Forming Your Walk Team Today!

GLHF News

…blood safety. Funding research to develop better treatments. Building a supportive community. Promoting choices that lead to optimal health. Start forming your walk team today! Visit our website for information….

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Report Focuses on Two Cases of Sporadic CJD in the UK

Industry News & Research

…of patients deceased and diagnosed with sporadic type Creutzfeldt-Jakob Disease (sCJD) in the United Kingdom (UK). sCJD is the most common type in a group of rare neurodegenerative diseases characterized…

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Introducing NHF’s Community-Powered Registry, MyBDC

Industry News & Research

community members, and add the communities voice to the conversation. How MyBDC works: Registered participants receive an initial survey followed by annual surveys Surveys collect data such as demographics, bleeding…

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NHF Letter to the Community on COVID-19

COVID-19

The greatest asset at NHF is the community we serve – our family of staff and volunteers. We are aware of the concerns in the community about the COVID-19 outbreak…

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NHF’s Bleeding Disorders Conference is Fully Virtual: August 1-8, 2020!

GLHF News

…education to each of you. One of the greatest strengths of the bleeding disorders community is our ability to adapt and reinvent ourselves when needed. NHF will work diligently to…

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BDC 2020 Updates and Transition to Virtual

Industry News & Research

Dear Community Members, The National Hemophilia Foundation’s priority has always been the health and safety of the bleeding disorders community. As the COVID-19 pandemic unfolds, it is clear that in…

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