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Anxiety, Depression Need Better Management in Hemophilia: Survey
Health and Well Being, Industry News & Research, Living with a Bleeding Disorder
…benefit from improved management strategies,” the researchers wrote. The study, “Pain, depression and anxiety in people with hemophilia from three Nordic countries: Cross-sectional survey data from the MIND study,” was…
GLHF Adds New Resources to Website
GLHF News
…This toolkit provides resources about many pain related issues in the form of: presentations (recorded webinars, videos) downloads (articles, documents) links to other resources View presentations, downloads and links to…
Navigating the financial challenges of bleeding disorders
Health and Well Being, Living with a Bleeding Disorder
…the community relied on HFA’s programs, so following are five alternate avenues for finding aid. Patient assistance programs Many pharmaceutical companies offer patient assistance programs to provide financial help to people who…
New Study Looks at Physical Activity Risk in Patients with Hemophilia A
Industry News & Research, Living with a Bleeding Disorder
This study designed to assess the link between physical activity levels, FVIII infusion, and occurrence of bleeding episodes. Results of a recently published study suggest that intense physical activities, particularly…
Study Finds Men with Hemophilia Have Higher Rates of Depression, Anxiety, and Obesity than the General U.S. Male Population
Health and Well Being, Men with Bleeding Disorders
…longer, it’s important to know what other health problems are affecting the aging hemophilia community to better understand the healthcare needs of this population. About the Study Community Counts is a…
Pfizer Presents Marstacimab Trial Updates at EHA Annual Meeting
Industry News & Research
…allows treaters to forgo the need for regular prophylaxis with traditional, intravenously infused factor replacement. These latest findings are an interim analysis of a long-term extension study of individuals participating…
Study Looks at Neuraxial Anesthesia and Postpartum Complications in Hemophilia
Industry News & Research
…more likely to experience postpartum complications. Neuraxial anesthesia refers to the administration of local anesthetics and analgesia to targeted locations in the spinal area. Epidurals are a commonly utilized form…
Paper Features Q&A Resource on Shared Decision Making and Gene Therapy
Industry News & Research
…light of these anticipated obstacles, an international and multidisciplinary group known of as the Council of the Hemophilia Community (CHC) was convened. Composed of independent advisors, HCPs, industry and patient…
An Alarming Rate of Coverage Losses
Advocacy & Legislation, Industry News & Research
…(B.141). The latest victories bring to 19 the number of states (along with D.C. and Puerto Rico) that now ban copay accumulator adjusters (CAAPs) for state-regulated plans (although for seven…
P2C Announces Partnership to Support Development for Sickle Cell Disease
Health and Well Being, Industry News & Research, Living with a Bleeding Disorder
…fund of the National Bleeding Disorders Foundation (NBDF) focused on investing in companies developing cures, therapies, or enabling technologies in support of the inheritable blood and bleeding disorders community. In…
COVID-19: Health and Wellness Update from NHF’s Dr. Leonard Valentino
COVID-19, Industry News & Research
…from the CDC titled “Guidance for Implementing COVID-19 Prevention Strategies in the Context of Varying Community Transmission Levels and Vaccination Coverage” for more information and for the latest recommendations, visit…
NHF Medical Advisory: CSL Behring and Ferring Pharmaceuticals have announced a recall of lots of Stimate®
Industry News & Research
…distribute this information to your membership. Please sign up for the Patient Notification System (PNS) to be notified directly about the latest recall or withdrawal of recombinant and plasma products….
Medical Advisory #427: Stimate Recall Update
Industry News & Research
…testing. The risks associated with higher than specified amounts of desmopressin relate to abnormally low level of sodium in the blood which could potentially lead to seizure, coma, and death….
Emergency Department Guidelines Now Available in Multiple Formats
Industry News & Research
…the country. Visit the NHF website to learn more about the guidelines and how to access them today! Founded in 1999, Guideline Central provides healthcare professionals with evidence-based clinical decision-support…
Comparing Adherence and Physical Activity in Hemophilia A Patients
Industry News & Research
…Project (HEP)-Test-Q, an instrument for the assessment of subjective physical functioning in children with hemophilia and the Early Prophylaxis Immunologic Challenge (EPIC)-Norfolk Physical Activity Questionnaire, a questionnaire designed for the…
Take the National HTC Patient Satisfaction Survey
Industry News & Research
…hear from you! You can take the survey online at www.htcsurvey.com, or fill out the paper survey you received in the mail. The survey closes on June 30, 2021. This…
Extended ACA Open Enrollment Period
COVID-19, Health and Well Being
You can enroll in health plans due to the COVID-19 emergency through August 15, or anytime if you have certain life changes or qualify for Medicaid or CHIP. Learn more…
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. The weekend provides an opportunity to attend educational…
Who Makes the Decision?
Living with a Bleeding Disorder
by: Derek L. Markley It has been more than eight years since St. Jude Children’s Research Hospital, University College London, and the Royal Free Hospital began a clinical trial using…
Medscape Launches Activity for Emergency Department Providers
Industry News & Research
…this activity, participants will: Discuss common complications related to hemophilia Triage and assess hemophilia patients who present to the ED Apply latest recommendations for treating hemophilia patients in the emergency…
New Data From Phase IIIb Study Reinforces Safety Profile of Genentech’s Hemlibra (emicizumab-kxwh) in People With Hemophilia A
Industry News & Research
…most common AEs, occurring in 10% or more of people in the STASEY study, were common cold symptoms (nasopharyngitis; 12.4%), headache (11.9%) and injection site reactions (ISRs) (11.4%). The ISRs…
Freeline Announces First Patient Doses in Hemophilia B Trial
Industry News & Research
…study of FLT180a, and currently plan to initiate start-up activities for that study in the first half of 2023,” Michael Parini continued. The Company expects to report initial safety and…
Telehealth for the Bleeding Disorders Community
Health and Well Being, Industry News & Research, Living with a Bleeding Disorder
…a missed annual exam or streamline checkups for people in the blood and bleeding disorders community. And use among the bleeding disorders community has been higher than national averages: More than a third…
NHF’s 72nd Bleeding Disorders Conference
Industry News & Research
…bleeding disorders care. Some of what you can expect at this year’s conference: A three-hour VWD preconference on Thursday, August 6that 10:00am. Updates on the latest treatments and therapies, including…