News

Forty-Five Families will Join us for the Wisconsin Bleeding Disorders Conference June 2-4 in Wisconsin Dells

GLHF News, Uncategorized

The Wisconsin Bleeding Disorders Conference is June 2-4 in Wisconsin Dells. Join us at the Kalahari Resort for a Weekend of Family…

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Updates on Generic Desmopressin Product

Industry News & Research, Uncategorized

Desmopressin has the capacity to boost both factor VIII and von Willebrand factor levels. In July 2020 Ferring Pharmaceuticals suspended manufacturing of…

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Sanofi Announces Publication of Two Phase 3 Fitusiran Trials

Industry News & Research, Uncategorized

Fitusiran is being investigated for the prophylactic treatment of adults and adolescents with hemophilia A or B. Sanofi recently announced that results…

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Calling All Walkers! The 2023 Unite for Bleeding Disorders Walk Will Be September 23! Register Your Walk Team Today!

GLHF News, Uncategorized

GLHF’s 2023 Unite for Bleeding Disorders Walk will be Saturday, Sept. 23 at the Milwaukee County Zoo. The 2023 Unite Walk website is…

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GLHF’s Green Bay’s Best Bloody is May 21! Drink Local. Give Local. Get Your Tickets Today!

GLHF News, Uncategorized

We’re back at the Resch Expo for GLHF’s 2nd Annual Green Bay’s Best Bloody on Sunday, May 21. Limited tickets are still available! Attendees…

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GLHF Announces Winners for Bloody Mary Competitions in Milwaukee and Madison

GLHF News, Uncategorized

GLHF is proud to announce the winners for the first two of three Best Bloody Mary competition fundraisers this spring – Milwaukee’s…

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Guilt in Mothers of Children with Hemophilia Focus of New Study

Health and Well Being, Living with a Bleeding Disorder, Uncategorized

Researchers from the Children’s Healthcare of Atlanta and Emory University recently published the results of a small study investigating the subject of…

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Hemochromatosis Classification: Update and Recommendations by the BIOIRON Society

Industry News & Research, Uncategorized

This is a related article to: Hemochromatosis redefined Abstract Hemochromatosis (HC) is a genetically heterogeneous disorder in which uncontrolled intestinal iron absorption may…

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FDA approves once-weekly ALTUVIIIO™, a new class of factor VIII therapy for hemophilia A that offers significant bleed protection

Industry News & Research, Living with a Bleeding Disorder, Uncategorized

FDA approves once-weekly ALTUVIIIO™, a new class of factor VIII therapy for hemophilia A that offers significant bleed protection Paris and Stockholm – February 23, 2023 – The U.S. Food and Drug Administration (FDA) has…

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Introducing the WFH Gene Therapy Registry

Industry News & Research, Uncategorized

The new registry will enhance knowledge of gene therapy and help keep patients safe. The World Federation of Hemophilia (WFH) is a nonprofit organization…

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

Industry News & Research, Uncategorized

BioMarin Pharmaceutical Inc., a global biotechnology company dedicated to transforming lives through genetic discovery, announced that it received notice this afternoon from the…

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FAQ: Proposed Changes to the FDA Blood Donation Policy

Industry News & Research, Uncategorized

Answering Your Questions on the recent FDA blood donation policy revisions. Answering Your Questions on the Proposed Change to the FDA’s Blood…

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Aminocaproic Acid Manufacturer Shuttered Though Not Expected to Trigger Shortage

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

Aminocaproic acid, which helps prevent the premature breakdown of blood clots, is often used to treat more minor bleeds in the nose…

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Guilt in Mothers of Children with Hemophilia Focus of New Study

Health and Well Being, Living with a Bleeding Disorder, Uncategorized

Study authors looked at potential contributing factors to guilt, coping strategies, and perception of children’s life satisfaction. Researchers from the Children’s Healthcare…

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Start the Conversation: From Patient to Physician

Health and Well Being, Living with a Bleeding Disorder, Uncategorized

To end Bleeding Disorders Awareness Month and celebrate National Doctors Day, Dr. Aaron Chen shares his story of how living with thalassemia…

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Summit Emphasizes Pharmacovigilance in the Inherited Bleeding Disorders Community

Industry News & Research, Uncategorized

The NHF/HFA Safety Summit yielded a series of recommendations related to product safety in the inherited bleeding disorders community. Biomedical and pharmaceutical…

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uniQure Announces Published Trial Results for Approved Gene Therapy

Industry News & Research, Uncategorized

These results were based on the multi-year HOPE-B Trial program. uniQure recently announced publication of the clinical trial results associated with approval…

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New Medscape Activity to Help Institutions Offer Gene Therapy

Industry News & Research, Uncategorized

NHF is pleased to announce that its collaboration with Medscape continues with a new accredited educational activity designed to help healthcare providers…

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BioMarin Announces FDA’s Extended Review of Investigational Hemophilia Gene Therapy

Industry News & Research, Uncategorized

ROCTAVIAN™ is currently in multiple ongoing clinical trials to observe its safety and efficacy in adult patients with severe hemophilia A. On…

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What You Need to Know About Hemochromatosis

Industry News & Research, Living with a Bleeding Disorder, Uncategorized

This blood disorder affects more than 1 million Americans and has no cure, but there are effective treatments. Hemochromatosis, also known as…

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GLHF’s Wisconsin Bleeding Disorders Conference is June 2-4. Registration is Open Until April 24!

GLHF News, Uncategorized

Each year Great Lakes Hemophilia Foundation hosts the Wisconsin Bleeding Disorders Conference (WBDC) for individuals and families living with a bleeding disorder….

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Is your Camper Ready to Move into a Leadership Role? Applications for Camp Klotty Pine’s LIT Program are Due March 26. Join us April 29-30 for our LIT Retreat.

GLHF News, Uncategorized

Calling all former Camp Klotty Pine campers and Leaders-in-Training (LITs)! Is your camper age 15-18 and ready to move into a leadership…

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Calling all Campers! Get Ready to Join us August 7-12.

GLHF News, Uncategorized

Join us for Camp Klotty Pine, August 7-12. Camp Klotty Pine creates a magical, life-changing experiences for children living with a bleeding disorder….

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Advocates Met with State Reps for WI Legislative Day – All Copays Count Legislation is Top Priority

Advocacy & Legislation, GLHF News, Uncategorized

Community advocates gathered on March 1st at the State Capitol for GLHF’s Wisconsin Legislative Day. We shared stories of life with a bleeding…

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