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…

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…

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…

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…

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…

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…

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…

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…

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…

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…

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…

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…

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…

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…

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…

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…

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…

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…

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…

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…

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….

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…

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….

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…