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The FDA Releases a New Webpage During Covid-19 Outbreak
COVID-19
…Patients https://www.fda.gov/patients Questions and Answers for Patients About Clinical Trials During COVID-19 Outbreak https://www.fda.gov/patients/coronavirus-disease-2019-covid-19-resources-patients/questions-and-answers-patients-about-clinical-trials-during-covid-19-outbreak Patient Affairs Staff (PAS) Office of the Commissioner U.S. Food and Drug Administration Tel:…
Types of Bleeding Disorders
…experienced symptoms. Tests that evaluate clotting time and a patient’s ability to form a clot may be ordered. A clotting factor test, called an assay, and tests measuring platelet function…
Stimate Recall: NHF and HFA Seek Answers
Advocacy & Legislation, Industry News & Research
…the bleeding disorders community and how the future safety of Stimate® will be secured. NHF and HFA will continue to keep the bleeding disorders community informed as these communications continue….
Mental Health During Coronavirus
COVID-19, Industry News & Research
…struggle with mental health challenges. To contact Debbie: www.mentalhealthmatterstoo.com or debbie@mhmtoo.com. ©LA Kelley Communications, Inc. www.kelleycom.com Reprinted with permission. Publication: PEN 8.20 Column: You Mental Health During Coronavirus Debbie de…
BioMarin Hemophilia A Clinical Development Program: An Update for the Hemophilia Community
Industry News & Research
…did not identify any new safety concerns but recommended that BioMarin complete the Phase 3 Study and submit two-year follow-up safety and efficacy data on all study participants. BioMarin remains…
Clinical Study and New Website to Focus on von Willebrand Disease and Pregnancy
Health and Well Being, Industry News & Research, Living with a Bleeding Disorder
…An exciting component of the VIP is a new companion website, created to keep patients and healthcare professionals informed about the study. It will provide information on VIP’s design, patient…
New Study Reveals That Age Affects von Willebrand Disease Diagnosis
Health and Well Being, Living with a Bleeding Disorder, Men with Bleeding Disorders, Women with Bleeding Disorders
…of the study, spoke to HemAware about what the study findings mean for people with mild von Willebrand disease and the health care community. Recommendations for Diagnosis, Treatment “All patients with von…
What to Do if You Miss Your Child’s Annual Exam
Living with a Bleeding Disorder
…remote appointments like in-person appointments and prepare as you normally would. To get the most out of your virtual visit: Prepare a series of questions before the appointment so you…
Open Enrollment for 2023 Health Insurance is Underway!
Advocacy & Legislation, Health and Well Being
Open enrollment for 2023 health insurance programs has started! The Hemophilia Federation of America (HFA) offers tips for navigating the open enrollment process. Learn more about 2023 Open Enrollment. Learn…
A Groundbreaking Discovery for Hemophilia Research
Health and Well Being, Industry News & Research
…and read chemistry and biology, and it would just sink in,” Vehar says. So he decided to stick with the biological sciences as a career after finishing college. Complicated Search…
BioMarin Hemophilia A Clinical Development Program: An Update for the Hemophilia Community
Industry News & Research
…EMA granted the company’s request for accelerated assessment. Accelerated assessment reduces the time frame for the EMA Committee for Medicinal Products for Human Use (CHMP) and Committee for Advanced Therapies…
Common Questions About von Willebrand Disease (VWD)
Health and Well Being, Industry News & Research, Living with a Bleeding Disorder
…seven days; and heavy bleeding after childbirth or miscarriage VWD is diagnosed through a combination of blood tests including a VWF antigen test — which measures the amount of VWF…
Read the HFA’s Latest Legislative Updates – State of the States July 2022
Advocacy & Legislation
Read the Hemophila Federation of America’s (HFA) latest legislative update – State of the States, July 2022. This update includes information on the following topics: Copay accumulator prohibitions advance in…
Does Having a Bleeding Disorder Mean I’m at a Higher Risk for Contracting COVID? Q & A.
COVID-19, Living with a Bleeding Disorder
…answers to some of the most common questions and concerns. Does having a bleeding disorder mean I’m at a higher risk for contracting coronavirus? Having a bleeding disorder does not…
Pfizer and Sangamo Therapeutics Announce Phase 3 Trial of Investigational Gene Therapy for Hemophilia A Has Re-Opened Recruitment September 23, 2022 Share on facebook Share on twitter Share on linkedin
Industry News & Research, Living with a Bleeding Disorder
…a pivotal readout is expected in the first half of 2024. About the AFFINE study The Phase 3 AFFINE (NCT04370054) study is an open-label, multicenter, single-arm study to evaluate the…
BioMarin’s New Clinical Study to Focus on Antibody Development to AAVs
Industry News & Research
…generated from SAAVY will help: Inform the community of the utility of AAVs as delivery vehicles for gene therapy Guide development of reliable antibody testing methods Inform the community of…
Free Educational Videos on the use of Novel Non-Factor Therapies
Industry News & Research, Living with a Bleeding Disorder
…Novel Technologies for Hemophilia; Managing Complex Cases with Novel Non-Factor Therapies; Navigating Reimbursement for Patients on Non-Factor Therapy. Visit the series homepage to watch these easily accessible videos and please be sure…
Milwaukee Adds Virtual Field Trip Portal and a Virtual Weatherization Day – Including Free Weatherization & Grab and Go Bags on Halloween!
COVID-19
…Milwaukee. Virtual Weatherization Day Milwaukee County’s Virtual Weatherization Day is this Friday, Oct. 30. This free online event will feature a virtual resource fair, informational videos, a special message from…
Specific Risks of COVID-19 to the Bleeding Disorders Community
COVID-19
…regarding Covid-19 and its impact on our community. GLHF will be notifying you about these video webinars, as well as posting articles and information from the WFH on our website….
Ask a Social Worker: How Can I Convince Someone to Seek Mental Health Treatment?
Health and Well Being
Advice for family members on how to bring up mental health treatment with loved ones. Ask a Social Worker is a monthly column featuring questions from the community and answers…
New FIX Chromogenic Assay Launched by Precision Biologics
Industry News & Research
…only FDA-cleared chromogenic FIX assay on the market that “answers a growing demand for such tests.” “Precision Biologic provides tools to help laboratory professionals make the best decisions, faster,” says…
Managing a Bleeding Disorder During a Pandemic
COVID-19, Living with a Bleeding Disorder
…answers to some of the most common questions and concerns. Does having a bleeding disorder mean I’m at a higher risk for contracting coronavirus? Having a bleeding disorder does not…
Descriptive Study Looks at HTC Social Worker Roles
Industry News & Research
…via an online survey on six key roles/work tasks, including counselling, case management, financial/insurance, outreach/programs, administrative, and grants/research. The purpose of this research was to uncover significant disparities between actual…
GLHF Hosts Event to Help Young Adults Own Their Future
GLHF News
…$500). We encourage people to apply for these scholarships today! Go to glhf.org/what-we-do/scholarships for information! There are also a number of scholarships on the National Hemophilia Foundation’s website at https://www.hemophilia.org/Community-Resources/Scholarships!…