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…trial setting was recently given to a patient in California. The patient, an adult with severe hemophilia A, received a single infusion of Roctavian™ (BioMarin) at the Center for Comprehensive Care &…

…the most common question McLean gets, and she likes to answer it with a question of her own: If you didn’t have to work, what would you do for free?…

Women can and do have bleeding disorders. Despite long-standing misconceptions about bleeding disorders in women, women’s voices and experiences are now being taken more seriously. Latest News and Information Charting…

…two publications have recently been published in Haemophilia, the official journal of the WFH. These publications offer recommendations to support and guide global outreach and identification efforts. The publication of…

…enrolled 54 subjects with severe or moderately severe hemophilia B. To learn more about the evolution of gene therapy for hemophilia B, please visit www.HemEvolution.com. Source: HEMAWARE, National Hemophilia Foundation…

…Bleeding Disorder Conference in August, this comprehensive overview comprised the Second Annual Victor Grifols Roura Medical Preconference Symposium. Made possible only through the generous support of Grifols, this symposium delves…

…come together and unite with other teams to support the entire bleeding disorders community,” said Whitney, Vincent’s mom. “Vincent likes to walk because he gets ice cream when we are…

NHF’s Annual Bleeding Disorders Conference (BDC) is their signature event and highlights their commitment to education. Leading community members and experts on hemophilia and other bleeding disorders come together every…

Gene Therapy is definitely a dominant topic in the bleeding disorders community, with new articles being published regularly. Read some of the latest publications addressing the future of gene therapy…

At the National Bleeding Disorders Foundation’s Conference this past summer, Dr. Karen Zimowski highlighted the latest personalized treatments for inherited bleeding disorders, from prophylaxis to gene therapy, marking a new…

Infections from respiratory viruses, including the latest COVID-19 variants, are increasing this winter—but vaccines offer effective safeguards for people with inheritable blood and bleeding disorders. First, the bad news: Respiratory…

…immunomodulatory regimen in the phase 1/2 study and look forward to continuing our evaluation of this therapy in a Phase 3 study.” Source: Spark press release dated July 21, 2021…

…in June. Visit our website for information, or contact Karin at kkoppen@glhf.org. Camp Open House, held April 30, was an exciting and fun weekend! Camp Klotty Pine’s Open House, held…

…an unforgettable adventure. Registration is now open. Secure your spot by July 1. Registration If your child is ready to embrace summer camp this August 7-12, visit our website for…

A recent commentary published in the journal Haemophilia, posits that while clinical trials for hemophilia gene therapy approach conclusion, there remain significant unanswered questions and lingering concerns that can only…

NHF will be posting all communications from pharmaceutical companies regarding any potential affects that the COVID-19 pandemic could have on the manufacture and distribution of their products. If you have…

…you enjoy. Connect with others. Talk with people you trust about your concerns and how you are feeling. Connect with your community- or faith-based organizations. While social distancing measures are…

…the latest scientific developments. When the pandemic began, we created a COVID-19 webpage with resources specifically for patients. We continue to update it regularly and encourage you to check it…

…HFA have reiterated their need for a more complete response from Ferring and CSL Behring so that we can update impacted community members. “VWD is the most common bleeding disorder…

…Adult Hemophilia Treatment Center. “The patient and their doctor must balance the risk of a serious bleeding complication against that of a serious clotting complication such as heart attack or…

…A Vaccine FAQ for Our Community As the vaccine becomes more available, we know many people in our community have questions. We compiled an FAQ based off questions we’ve received…

…study populations,” said Tim Harris, PhD, DSc, executive vice rresident, research and development at Bioverativ. “We remain focused on and committed to providing complete protection for people with hemophilia.” Debilitating…

…Qvigstad and his fellow authors looked at data from the previously completed H3 study, conducted by the ADVANCE (Age-related DeVelopments ANd ComorbiditiEs in hemophilia) Working Group. ADVANCE consists of experienced…

…Qvigstad and his fellow authors looked at data from the previously completed H3 study, conducted by the ADVANCE (Age-related DeVelopments ANd ComorbiditiEs in hemophilia) Working Group. ADVANCE consists of experienced…