News
The Importance of Copay Assistance Protections: Awareness Grows
Industry News & Research, Living with a Bleeding Disorder
For over three decades, March has been designated “Bleeding Disorders Awareness Month.” HFA and member organizations across the country mark the occasion…
FAQ: Proposed Changes to the FDA Blood Donation Policy
Industry News & Research
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
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
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
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
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
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
Gene Therapy, Industry News & Research, Living with a Bleeding Disorder
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
ROCTAVIAN™ is currently in multiple ongoing clinical trials to observe its safety and efficacy in adult patients with severe hemophilia A. On…
New Survey Spotlights Ongoing Concerns for People with Hemophilia B
Health and Well Being, Living with a Bleeding Disorder
Carefully controlled schedules. Undercurrents of uncertainty. Persistent pain. People who are living with hemophilia B, and those who love them, face a…
What You Need to Know About Hemochromatosis
Industry News & Research, Living with a Bleeding Disorder
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
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
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
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
Community advocates gathered on March 1st at the State Capitol for GLHF’s Wisconsin Legislative Day. We shared stories of life with a bleeding…
Study Suggests Significant Rates of Depression and Anxiety for Individuals with VWD
Industry News & Research
Findings from this study indicate that a relatively high proportion of participants with von Willebrand disease met the criteria for both depression…
Pfizer Announces Trial Updates for Investigational Hemophilia Gene Therapy
Industry News & Research
A primary focus of the trial was to compare annualized bleeding rates associated with a single infusion of the investigational gene therapy…
Takeda Announces Trial Results on Investigational Therapy for Ultra Rare Blood Disorder
Industry News & Research
TAK-755 is being investigated for the treatment of congenital thrombotic thrombocytopenic purpura. Takeda recently announced favorable results from a phase 3 study…
Biomarin Provides Hemophilia A Clinical Development Program Updates
Industry News & Research
BioMarin recently shared a community update on their Hemophilia A Clinical Development Program for valoctocogene roxaparvovec, the company’s investigational gene therapy currently…
WFH Gene Therapy Registry Goes Live
Industry News & Research, Living with a Bleeding Disorder
The new registry will help monitor the long-term safety and efficacy of hemophilia gene therapies in people around the world. The World…
Medicaid and CHIP Continuous Enrollment Unwinding
Advocacy & Legislation, Industry News & Research
Get information on your state’s plan to restart yearly Medicaid and Children’s Health Insurance Program (CHIP) eligibility reviews. Do you or a…
NHF Assumes Leadership of the American Plasma Users Coalition
Advocacy & Legislation, Industry News & Research
NHF Assumes Leadership of the American Plasma Users CoalitionThe organization’s public policy representatives offer new perspectives in the mission for blood and…
New FIX Chromogenic Assay Launched by Precision Biologics
Industry News & Research
This assay is designed to help determine factor IX activity levels in the plasma of individuals with hemophilia B who are two…
FDA Accepts BioMarin’s Biologics License Application (BLA) for Valoctocogene Roxaparvovec AAV Gene Therapy for Adults with Severe Hemophilia A
Industry News & Research
If Approved, Would Be 1st Gene Therapy in U.S. for Treatment of Severe Hemophilia A PDUFA Target Action Date is March 31, 2023….