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Tim Ringgold Delivers Musical Keynote that Inspires and Motivates
GLHF News
…– not easily penetrated; not easily yielding to pressure. An uncomfortably hard chair. A wall, granite. To dispel the myth created by the use of the word ‘hard’ in describing…
Update on ACA Lawsuit
Industry News & Research
…for 2021 health plans. (Enrollment in Medicaid continues to be available 365 days a year for eligible individuals.) Take action during this Fall’s open enrollment period to get the comprehensive…
PTSD Can Affect People with Bleeding Disorders
Health and Well Being, Industry News & Research, Living with a Bleeding Disorder
While post-traumatic stress disorder is commonly connected with soldiers, people battling chronic illnesses can have it, too. Here’s how to identify the symptoms and get the help you need. Justin…
UPDATE: Takeda to Voluntarily Replace Certain BAXJECT® II Reconstitution Devices
Industry News & Research
…at 1-877-TAKEDA-7 (1-877- 825-3327). You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch or call 1-800-FDA-1088. Source: Hemophilia Federation of America (HFA), September…
Von Willebrand Emergency Care Manual Now Available in Spanish
Health and Well Being, Industry News & Research
…are not well versed in the treatment and management of von Willebrand disease (VWD). The stated goals of the manual are to- Promote understanding of the complexities of VWD with…
Pain Management
…Pain Management: An Easy-to-Understand Guide Which pain management treatments for complex health conditions are covered by Medicare? Take a look. Source: RetireGuide, LLC Communicating with your Provider About Pain Many…
Study Results Encourage Discussion of Therapeutic Options for VWD Patients with Menorrhagia
Industry News & Research
…45 years. completed the study. All of the participants experienced HMB defined as a pictorial blood assessment chart (PBAC) score of more than 100 in one of the past two…
Pilot Study Explores Educational Needs of HTC Physical Therapists
Industry News & Research, Living with a Bleeding Disorder
…Ultimately, 44 surveys were returned, and of those 28 were fully completed. The average years of clinical practice were 22.8. The majority (95.5%) participated in their HTCs annual comprehensive exams…
MASAC Letter to the Community Regarding the Coronavirus Disease 2019
COVID-19
…Hemlibra in the future, and their commitment to keeping the hemophilia community informed as this situation evolves. This reassurance has also been supported by other manufacturers who’ve been in communication…
New Nursing Guidelines Available on Administration of Bleeding Disorders Therapies
Industry News & Research
These guidelines are readily accessible in PDF format on the NHF website. NHF is pleased to announce that two new resources have been added to the Nurses’ Guide to Bleeding…
Prophylaxis Study Results for Boys with Severe Hemophilia A
Industry News & Research
…escalating frequency, including requisite dose adjustments, in response to breakthrough bleeding events. The study, “Tailored Frequency-Escalated Primary Prophylaxis for Severe Haemophilia A: Results of the 16-year Canadian Hemophilia Prophylaxis Study…
New Descriptive Study Looks at Bleeding Disorder Camps
Industry News & Research
The study included a number of notable findings relevant to the participation of healthcare providers in bleeding disorder camps (BDCs), adherence to camp guidelines, and self-infusion education. While it has…
Diabetes Risk in Hemophilia vs Unaffected Groups Compared in Retrospective Study
Industry News & Research, Living with a Bleeding Disorder
…team of researchers recently conducted a retrospective study to shed light on the subject by contrasting risk in clinic vs non-clinic populations. They compared adult PWHs against two control cohorts,…
Depression, anxiety prevalent among hemophilia patients: Study
Health and Well Being, Industry News & Research, Living with a Bleeding Disorder, Men with Bleeding Disorders
…the researchers wrote. “The diagnosis and treatment of mental health problems in patients with hemophilia could make a major contribution to their quality of life.” The study, “Depression and anxiety…
Study Shows Pain and Mobility Issues Common with Moderate Hemophilia
GLHF News, Pain Management
…people with moderate hemophilia in Nordic countries regardless of age, commonly causing them pain and restricting their mobility, a study found. Middle-age patients, those 41 to 50 years old, felt…
FDA Approves Second Hemophilia B Gene Therapy Product
Gene Therapy, Industry News & Research, Living with a Bleeding Disorder
…results from the phase 3 BENEGENE-2 clinical study. Study investigators looked at safety and efficacy in BEQVEZ-treated adult males with severe or moderate hemophilia B. A primary endpoint of the trial, and…
as i see it: Patient Education Through Social Media in the COVID Era
COVID-19, Health and Well Being, Living with a Bleeding Disorder
…Management,” Electronic Commerce Research and Applications 27 (2018): 139–51. 5. M. Stellefson, et al., “Evolving Role of Social Media in Health Promotion: Updated Responsibilities for Health Education Specialists,” International Journal…
National Hemophilia Foundation “Starts the Conversation” During Bleeding Disorders Awareness Month, March 1-31
Advocacy & Legislation, Health and Well Being, Living with a Bleeding Disorder
…a wide variety of experiences across disease states, research, education, and advocacy. “Start the Conversation” invites community members, supporters, and medical providers to use BDAM as a prompt for starting…
NBDF Unveils THRIVE Campaign: Empowering Individuals with Bleeding Disorders through 6 Essential Steps
Industry News & Research
…specializing in bleeding disorders. H – Have a conversation with your healthcare provider about yearly inhibitor testing. R – Review the latest treatment options for you. I – Identify, treat,…
Madison’s Best Bloody
Get DetailsJoin us for our 4th annual Madison's Best Bloody on...
NHF Calls on CMS to Address Copay Accumulator Adjustors in the 2024 Notice of Benefit and Payment Parameters
Advocacy & Legislation, Industry News & Research
…patients.” To support action on this issue, the All Copays Count Coalition recently launched a new website designed to inform and engage the policy community on CAAPs and the harmful…
WFH Humanitarian Aid Program supports Syrian refugees (Part 1: Karam’s story)
Advocacy & Legislation, Health and Well Being, Living with a Bleeding Disorder
…food and water are in short supply, getting factor might seem impossible. Fortunately, the WFH aims to support the global bleeding disorders community in even the most challenging situations through…
Cell-based Gene Therapy May Offer Long-term Treatment for Hemophilia A, Mouse Study Suggests
Industry News & Research
…addition, the transplant was more successful if performed a few days after birth, compared with adults. Based on that observation, the researchers tested the combined PMSC-ECFC transplant in a mouse…
Pfizer Announces First Participant Dosed Phase 3 Study of Marstacimab
Industry News & Research
…the phase 3 BASIS study of marstacimab, the company’s investigational hemophilia therapy that targets an anticoagulant protein known as tissue factor pathway inhibitor (TFPI). Marstacimab is a laboratory-engineered monoclonal antibody…