News
How to Keep Summer Activities Safe for Kids with Bleeding Disorders
Health and Well Being, Living with a Bleeding Disorder
Learn why a popular piece of backyard play equipment is riskier than you might think. It’s summertime, and kids are out of…
CSL Behring Announces the First Patient has Received FDA ApprovedHEMGENIX® (etranacogene dezaparvovec-drlb) for Hemophilia B
Industry News & Research
HEMGENIX®, the first and only FDA approved gene therapy for hemophilia B,has been proven to elevate and sustain factor IX levels for…
Announcement from NHF CEO and President
Industry News & Research
Dr. Leanord Valentino announces his impending retirement. His statement reflects on the progress and initiatives made during his three and a half…
FDA Finalizes Blood Donor Eligibility Guidance
Industry News & Research
On May 11, 2023, the U.S. Food and Drug Administration released final guidance providing recommendations for evaluating blood and plasma donor eligibility using individual risk-based…
It is Family: A Conversation with Saylor Behrens
Health and Well Being, Living with a Bleeding Disorder
When Saylor Behrens’ biology professor told her class that hemophilia is the result of incest, she grew angry. She knew better. Her…
Pfizer Highlights Phase 3 Trial Results of Marstacimab
Industry News & Research
Marstacimab is a laboratory-engineered monoclonal antibody developed to treat hemophilia A and B patients, with or without inhibitors. Pfizer has announced positive…
Camp Klotty Pine is August 7-12. Register Today!
GLHF News
Camp Klotty Pine is a place of encouragement, mentoring, and education. It is a space that allows everyone to be uniquely themselves, breaking…
Gene Therapy as a Novel Approach to Achieving ITI in FVIII Inhibitors Reviewed
Industry News & Research
The review provides a comprehensive overview of the persistent challenges and current mitigation strategies related to treating and managing hemophilia patients with…
Does Hemophilia Mean Brittle Bones? Part 1.
Health and Well Being, Living with a Bleeding Disorder
by: Paul Clement Many studies have linked having hemophilia to a significantly increased risk of developing osteoporosis, or “holey bones” (osteo means “bone”…
FDA Finalizes Blood Donor Eligibility Guidance
Industry News & Research
On May 11, 2023, the U.S. Food and Drug Administration released final guidance providing recommendations for evaluating blood and plasma donor eligibility using individual risk-based…
Pfizer Highlights Phase 3 Trial Results of Marstacimab
Industry News & Research
Marstacimab is a laboratory-engineered monoclonal antibody developed to treat hemophilia A and B patients, with or without inhibitors. Pfizer has announced positive…
The Low Cost of Being Female with a Bleeding Disorder?
Health and Well Being, Industry News & Research, Living with a Bleeding Disorder
Female hemophilia A patients and carriers have more frequent bleeds than males, yet a smaller proportion receive factor to prevent or stop them, a U.S….
Now Enrolling: Own Your Path
Industry News & Research
Are you a male, 18-29 years old, and on a prophy regimen for hemophilia treatment? You may qualify for a new program!…
Four New Documents from MASAC
Industry News & Research
The new guidelines cover recommendations for physical therapy, gene therapy readiness, vaccine guidance, and treatment. Download here. Source: National Hemophilia Foundation
New in Research: Updates on the “My Life Our Future” Project
Industry News & Research
Learn how this project from NHF, the American Thrombosis and Hemostasis Network, Bloodworks Northwest, and Bioverativ/Sanofi helped inform people with hemophilia on…
Forty-Five Families will Join us for the Wisconsin Bleeding Disorders Conference June 2-4 in Wisconsin Dells
GLHF News
The Wisconsin Bleeding Disorders Conference is June 2-4 in Wisconsin Dells. Join us at the Kalahari Resort for a Weekend of Family…
Inhibitor Risk Paper Informed by Genotyping Project
Industry News & Research
Between 2013-2017, the “My Life Our Future” (MLOF) project offered eligible individuals with hemophilia free genotyping, which is historically hard to access,…
Important: Action Needed Regarding Medicaid and Badgercare Eligibility
Advocacy & Legislation, Industry News & Research
As you may have heard, the Medicaid and CHIP (called Badgercare in Wisconsin) programs are re-starting eligibility reviews. Community members may receive…
FDA Requests Additional Information on Concizumab from Novo Nordisk
Industry News & Research
The company received a Complete Response Letter from the FDA seeking more information relevant to their BLA for concizumab. Novo Nordisk has…
Updates on Generic Desmopressin Product
Industry News & Research
Desmopressin has the capacity to boost both factor VIII and von Willebrand factor levels. In July 2020 Ferring Pharmaceuticals suspended manufacturing of…
New Survey Spotlights Ongoing Concerns for People Living with Hemophilia B
Health and Well Being, Industry News & Research, 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…
HTCs Participate in New CDC Community Counts Data Collection for COVID-19
COVID-19, Industry News & Research
Patients with bleeding orders may be asked some new questions during their next comprehensive clinic visit. COVID-19 information will now be collected…
Sanofi Announces Publication of Two Phase 3 Fitusiran Trials
Industry News & Research
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
GLHF’s 2023 Unite for Bleeding Disorders Walk will be Saturday, Sept. 23 at the Milwaukee County Zoo (in the Zoo Terrace). We will…