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Bone Health in VWD and Hemophilia Carriers the Focus of Retrospective Study
Industry News & Research
…to prevent complications. “This study highlights the need for Haemophilia Treatment Centres to focus on the bone health in these patients and pay closer attention to other risk factors during…
New Study Looks at Hemophilia Survival Rate Disparities
Health and Well Being, Industry News & Research, Living with a Bleeding Disorder
Black men experience much lower hemophilia survival rates compared to their white counterparts. Results of a new study published in the journal Haemophilia are illustrative of persistent health disparities existing within the…
Meet Dr. Bosula Oluwole
Industry News & Research
…a JML recipient, Dr. Oluwole will receive financial support over three years that will aid her clinical research. JML identifies clinicians from under-represented communities and genders who are early in…
CDC Updates Guidance on COVID-19 Transmission
COVID-19
Although posted on the CDC website on Friday, September 18th and reported in the popular press, a major change in the guidance from the CDC in the transmission of COVID-19…
Hemophilia and Blood Clots: A Surgery That Nearly Cost Me My Life
Living with a Bleeding Disorder
…levels away to be processed. The tests didn’t come back for more than a week, and there was no way for hematologists to know that my factor VIII level was…
Patient-Reported Data Informs New Study on Sexual Health and Hemophilia
Health and Well Being, Industry News & Research, Living with a Bleeding Disorder
…study was conducted to establish the prevalence of sexual difficulty in this population, compare it with that of people with no bleeding disorder (PWNoBD), and to uncover contributing factors to…
An Update on Gene Therapy for Hemophilia
Industry News & Research
Answers to common questions about this potentially game-changing treatment. After several decades of research, gene therapy for hemophilia is moving closer to becoming a reality. One of the most sought-after…
New Resource Compilation on Gene Therapy for Hemophilia
Gene Therapy, Industry News & Research
…about Gene Therapy, especially for those in the Hemophilia community. This collection includes easy-to-understand scientific articles, answers to common questions, and a glossary of key terms. In a newly published resource in this compilation…
Accredited Gene Therapy Educational Opportunities Available Online Now
Industry News & Research
…on the latest data for therapies in development, and critically evaluate the potential role gene therapy may play in patient care, both now and in the future. Originally presented as…
Meet MASAC’s New Chair: Dr. Amy Dunn
Industry News & Research
…MASAC MASAC, which issues recommendations and advisories on treatment, research and other general health concerns for the blood and bleeding disorders community, “helps answers questions that we still have about…
NHF’s Community Voices in Research Replaces MyBDC Program – A Message From Leonard Valentino, M.D.
Industry News & Research
…will be transitioning to be known as the NHF’s Community Voices in Research. We need to continue to hear the voice of our community to help guide the direction of…
Mental Health
COVID-19
…and resource guide that addresses how COVID-19 can affect mental health as well as providing extensive resources on everything from adjusting to working from home to caring for elderly relatives….
UniQure Announces Interim Hemophilia B Gene Therapy Trial Data
Industry News & Research
uniQure recently announced interim clinical trial data related to a phase IIb clinical study of etranacogene dezaparvovec (AMT-061), the company’s investigational gene therapy candidate for patients with severe and moderately…
Learn More About 2024 Bleeding Disorders Scholarships
Industry News & Research, Living with a Bleeding Disorder
…may include hemophilia, von Willebrand disease, and rare/ultra factor deficiencies. Application deadlines are fast-approaching. Access this link to download a 2024 KCS application and to view the complete list of 2024 scholarships….
CHOP Researchers Study Factor VIIa Prophylaxis Through Gene Transfer
Industry News & Research
…factor VIIa in rats with hemophilia A. Factor VIIa is most commonly associated with its current commercial form. Recombinant factor VIIa (rFVIIa) was approved by the U.S. Food and Drug…
Study Shows Higher Postpartum Hemorrhage in FXI Deficiency Patients Post Cesarean
Industry News & Research
…results were included in a research poster abstract presented on December 9, 2019 during the 61st American Society of Hematology Annual Meeting in Orlando, Florida. Since direct-to-consumer genetic testing…
Biomarin Provides Hemophilia A Clinical Development Program Updates
Industry News & Research
BioMarin recently shared a community update on their Hemophilia A Clinical Development Program for valoctocogene roxaparvovec, the company’s investigational gene therapy currently under review by the U.S. Food and Drug…
Guilt in Mothers of Children with Hemophilia Focus of New Study
Health and Well Being, Living with a Bleeding Disorder
…painful infusions. The most common coping strategies were accessing social support, self-education, and connecting with other mothers of CWH in the inherited bleeding disorders community. The authors emphasized the…
Industry Forms Alliance to Develop Potential Treatment for Patients with Serious COVID-19 Complications
COVID-19
…CSL Behring, the alliance also includes Biotest, BPL Group, LFB, Octapharma, and Takeda Pharmaceutical Company Limited. Additional companies may still join the effort. Primary points of collaboration will include plasma…
Show and Tell: Disclosing a Diagnosis in the School Setting
Living with a Bleeding Disorder
…civil rights law prohibiting discrimination against people with disabilities in any program or activity receiving or benefiting from federal financial assistance. Source: LA Kelley Communications, Inc. www.kelleycom.com. Reprinted with permission….
FDA Approves First-Ever Nonprescription Oral Contraceptive
Health and Well Being, Industry News & Research
…questions and answers. Lastly, visit the NHF website for more information on the programs designed to improve health outcomes for women with bleeding disorders. Source: FDA news release, July 13, 2023 (National…
Pfizer Reports First Quarter 2002 Update of Gene Therapy Trial
Industry News & Research
…had been placed on the Phase 3 AFFINE study in November 2021 following the observance of Factor VIII levels greater than 150% in some study participants. Pfizer will keep the…
National Hemophilia Foundation and Hemophilia Federation of America Partner for “Together Project”
Advocacy & Legislation, Industry News & Research
…HFA came together after realizing that combined efforts, resources and educational initiatives will help to better serve the community. For more on the Together Project or to download the project’s…
Fundraise to Increase Awareness About Bleeding Disorders
…individual managing their challenges. Community-Led Events A community-led event is an opportunity for you to use your creative ideas to help raise support for GLHF. Events can be as simple…