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Genentech Provides Updates on Hemlibra Product Particles
Industry News & Research
…inhibitors. To date, Genentech has not observed safety risks for hemophilia patients receiving Hemlibra® or impact on the product’s efficacy. In a new community update, Genentech describes steps the company…
HTC Visits and COVID-19
COVID-19
…for the best guidance on how seek the best possible care. NHF’s Steps for Living has information on how to prepare in advance for an emergency room visit. Also, see…
Active Dad Doesn’t Let Hemophilia Slow Him Down
Living with a Bleeding Disorder
…than any other competitor in these races. I just need to make sure I prepare by training and taking my medicine.” David stressed that exercise and nutrition are an incredibly…
FDA Approves BioMarin’s Gene Therapy for Adults with Severe Hemophilia A
Industry News & Research
…deficiency with FVIII activity < 1 IU/dL) without antibodies to adeno-associated virus serotype 5 (AAV5) detected by an FDA-approved test. The one-time, single-dose infusion is the first approved gene therapy…
NHF Fellowship: 50 Years of Insights, Innovation, and Breakthroughs
Industry News & Research
…are expected to spend at least 80% of their time on the funded research project. Here, five awardees share how the fellowship changed their careers, powering research that has affected…
Researchers Look at Impact of Factor X Deficiency on Patients/Caregivers
Industry News & Research
…a high risk for intracranial hemorrhaging in infants. Females often experience additional symptoms and complications including heavy menstrual bleeding, first trimester miscarriage, and post-partum hemorrhaging The online survey was open…
Researchers Look at Impact of Factor X Deficiency on Patients/Caregivers
GLHF News, Industry News & Research
…were prevalent with 63% of patients experiencing one-to-three bleeds within just four weeks of survey completion. Easy bruising/hematomas, along with bleeding into muscles and joints were the most commonly reported…
Sangamo and Pfizer Announce Interim Trial Data for Hemophilia A Gene Therapy
Industry News & Research
Sangamo Therapeutics, Inc and Pfizer, Inc. recently announced interim data from the phase 1/2 Alta study designed to evaluate SB-525, the company’s investigational gene therapy for people with hemophilia A/factor…
Spark Announces Preliminary Data from Investigational Gene Therapy Trial
Industry News & Research
Spark Therapeutics announced preliminary data from part one of their ongoing phase 1/2 open-label, non-randomized, dose-finding study of SPK-8016, the company’s investigational gene therapy for hemophilia A. Part one is…
uniQure Announces Positive Top-Line Data from the HOPE-B Pivotal Trial of Etranacogene Dezaparvovec Gene Therapy in Patients with Hemophilia B
Industry News & Research
uniQure N.V. (NASDAQ: QURE), a leading gene therapy company advancing transformative therapies for patients with severe medical needs, today announced positive top-line data from its pivotal, Phase III HOPE-B gene…
How Caregivers Can Care for Themselves
Health and Well Being
…you and the person you care for will benefit. Practice Relaxation Techniques Practicing relaxation techniques such as deep breathing exercises, guided meditation, guided imagery, yoga and progressive muscle relaxation takes…
For People with Bleeding Disorders, Adherence Is Still a Problem
Health and Well Being, Living with a Bleeding Disorder
…— hiking, biking, and playing sports, free from past limitations.” Tips for Staying Accountable Keeping on top of your treatment regimen can help prevent serious complications and improve your quality…
New Study on Aging, VWF Levels and Bleeding Risk
Industry News & Research
Investigators from the Hemophilia Center of Western Pennsylvania (HCWP) recently looked at the effect of aging on von Willebrand factor (VWF) levels in patients with type 1 von Willebrand disease…
Sigilon Releases Study Data on Hemophilia Cell Therapy
Industry News & Research
At the recent 2019 American Society of Gene and Cell Therapy Annual Meeting in Washington, DC, Sigilon Therapeutics presented data on an investigational cell therapy the company is developing to…
Patient Safety in the Age of Gene Therapy
Industry News & Research
…these concerns. The authors address fundamental considerations for people with hemophilia (PwH) patients, cognizant that each individual has their own personal health goals, lived experiences, and comfort level with open-ended…
Patient Safety in the Age of Gene Therapy a Central Focus of Review Article
Industry News & Research
…their own personal health goals and comfort level with open-ended questions of long-term risk vs. therapeutic benefits. Safety, in context of the hemophilia communities’ unique history, is a prominent through…
Join us for GLHF’s GooseChase Challenge Week. Help us Spread Awareness for the Global and Local Bleeding Disorders Community!
GLHF News
To commemorate World Hemophilia Day, we’re challenging the Wisconsin Bleeding Disorders Community to a friendly game of gooseChase! During the week of April 12-19, complete as many missions as you…
NBDF Releases Hemophilia Fast Facts
Industry News & Research, Living with a Bleeding Disorder
…or in childcare settings. The document can also be used to aid outreach efforts by chapters in local communities. Download a copy here. Source: National Bleeding Disorders Foundation, May 2024…
Help for People with Substance Abuse
Health and Well Being
…Document 279 is a helpful tool for advocating for fair consideration when it comes SUD access on behalf of PWBDs. Download here. Source: LA Kelley Communications, Inc., Communiqué, October 2023…
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…
Learn More About Gene Therapy
Gene Therapy, Health and Well Being, Industry News & Research
…gene therapy, much of it accessible for parents and patients. The list includes: FAQs, guides for patients and caregivers, a glossary. Download here. Source: LA Kelley Communications, Inc., Communique, September 2024…
Mental Health: Discussing the Pandemic with Your Child and Helping Your Child Cope with Anxiety and Stress
COVID-19
…Download the fact sheet here. Helping Your Child Cope with Anxiety and Stress in the Pandemic: Hemaware has put together advice for families in the bleeding disorders community during the…
Genentech Notice on COVID-19, Hemlibra®, and Laboratory Assays
Industry News & Research
…tests are often used for patients with bleeding disorders such as hemophilia, and to diagnose and monitor individuals suffering from other conditions that affect coagulation such as disseminated intravascular coagulation…
Hemlibra® is known to interfere with certain laboratory assays used to measure blood coagulation.
COVID-19
…tests are often used for patients with bleeding disorders such as hemophilia, and to diagnose and monitor individuals suffering from other conditions that affect coagulation such as disseminated intravascular coagulation…