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Managing a Bleeding Disorder During a Pandemic: Answers to 6 Common Questions About COVID-19
COVID-19
…and important updates from NHF CEO Leonard Valentino, MD. In addition, visit Hemophilia Federation of America’s COVID-19 Resources page and the World Federation of Hemophilia’s COVID-19 WFH Announcements and Statements….
Managing a Bleeding Disorder During a Pandemic
COVID-19, Living with a Bleeding Disorder
…updates from NHF CEO Leonard Valentino, MD. In addition, visit Hemophilia Federation of America’s COVID-19 Resources page and the World Federation of Hemophilia’s COVID-19 WFH Announcements and Statements. Source: HemAware…
Does Having a Bleeding Disorder Mean I’m at a Higher Risk for Contracting COVID? Q & A.
COVID-19, Living with a Bleeding Disorder
…NHF CEO Leonard Valentino, MD. In addition, visit Hemophilia Federation of America’s COVID-19 Resources page and the World Federation of Hemophilia’s COVID-19 WFH Announcements and Statements. Source: National Hemophilia Foundation…
Privacy Policy
…such as redundant firewalls, authentication services and an encrypted database unreachable by any public IP address. GLHF limits access of its constituent data to key personnel, on a needs only…
How Caregivers Can Care for Themselves
Health and Well Being
…may be hesitant to set up an in-person appointment, but there are still opportunities for virtual visits, and a wealth of mental health resources available online for free. Studies have…
Specific Risks of COVID-19 to the Bleeding Disorders Community
COVID-19
…with FVIII inhibitors receiving emicizumab, extra precautions should be taken if a patient requires aPCC due to the known drug-drug interaction between emicizumab and aPCC. https://www.hemlibra.com/hcp/safety.html?c=hea165155ea50d&gclid=EAIaIQobChMI7sT20bvG6AIVlddkCh3lFAG0EAAYASACEgI-2vD_BwE&gclsrc=aw.ds Be aware that some…
Specific Risks of COVID-19 to the Bleeding Disorders Community
COVID-19
…requires aPCC due to the known drug-drug interaction between emicizumab and aPCC. https://www.hemlibra.com/hcp/safety.html?c=hea165155ea50d&gclid=EAIaIQobChMI7sT20bvG6AIVlddkCh3lFAG0EAAYASACEgI-2vD_BwE&gclsrc=aw.ds Be aware that some one-stage coagulation assays, such as aPTT which is often used to diagnose and…
BioMarin Hemophilia A Clinical Development Program: An Update for the Hemophilia Community
Industry News & Research
…Drug Administration (FDA) for its investigational gene therapy, valoctocogene roxaparvovec, for adults with hemophilia A. On August 18th, 2020, BioMarin received a Complete Response Letter from the FDA. The FDA…
A Groundbreaking Discovery for Hemophilia Research
Health and Well Being, Industry News & Research
…up and spent three years devising an amino acid sequencer that was 10 times as sensitive as the ones commercially available at the time. And instead of using bacteria to…
New CME-Accredited Activity on Evaluating Patients with Suspected VWD
Industry News & Research
…managing risk and sustaining health and quality of life The activity has been designated for 0.50 AMA PRA Category 1 Credit(s)TM. It will remain available for credit at myCME.com until March 14, 2020….
COVID-19: Latest News and Updates
COVID-19
…financial hardships as a result of the COVID-19 pandemic. Applications are being accepted now through Dec. 18, 2020. Homeowners can apply through a web-based application at https://www.hri-wi.org/mortgage-assistance. Milwaukee County Zoo…
All Copays Count Coalition Applauds House Introduction of Help Ensure Lower Patient Copays Act
Advocacy & Legislation, Industry News & Research
…who depend on such assistance make less than $40,000 a year, leaving the most financially vulnerable patients at risk of losing access to necessary health care. In addition, a loophole…
Bleeding Disorders: What Your Pain Is Trying to Tell You
Health and Well Being, Living with a Bleeding Disorder, Pain Management
…they’re experiencing an active bleed in their joints or muscles. In other words, acute pain could be—but isn’t always—a sign of an active bleed. Acute pain in joints could come…
Changing Lives Through Camp
…are trained, evaluated, and guided throughout the entire program. Acceptance in future program years is dependent upon performance, attendance and goals accomplished. Once accepted, applicants will be granted online access…
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…
as i see it: Patient Education Through Social Media in the COVID Era
COVID-19, Health and Well Being, Living with a Bleeding Disorder
…media, and inviting them to participate in an online self-assessment tool to recognize abnormal bleeding symptoms.8 Although social media is now viewed as a universal communication channel, there is a…
Mental Health Crisis for Teens
Health and Well Being, Living with a Bleeding Disorder
…senior policy and healthcare analyst (mfeinstein@hemophilia.org or 212-328-3734) or Mark Hobraczk, senior manager for policy and advocacy at the Hemophilia Federation of America (m.hobraczk@hemophiliafed.org or 813-965-2127). Source: National Hemophilia Foundation,…
State of Denial: Tips on How to Work with Your Insurance Provider When You are Denied Coverage for Services or Medications
Health and Well Being, Industry News & Research, Living with a Bleeding Disorder
…Bottom line: If you and your healthcare team think that you’re not getting medically necessary treatment approved, you’ve got to speak up! Source: LA Kelley Communications, Inc., HemaBlog, Contact: info@kelleycom.com.…
Freeline Announces First Patient Doses in Hemophilia B Trial
Industry News & Research
…US. About FLT180a for Hemophilia B The Freeline hemophilia B program, FLT180a, uses a potent, rationally designed capsid (AAVS3) containing an expression cassette encoding a gain of function Padua variant…
Gene Therapy
…scientific articles, answers to common questions, and a glossary of key terms. Pfizer Announces New Data from Hemophilia A Gene Therapy Study (August 2024) Pfizer has announced positive topline results…
Are You Ready for GLHF’s 2023 Best Bloody Events? Holiday Ticket Prices Run Through Jan. 1!
GLHF News
New this year: Purchase tickets to multiple cities, at one time, and receive discounted pricing. Are you as excited as we are for GLHF’s 2023 Best Bloody series? Milwaukee’s Best…
Take the National HTC Patient Satisfaction Survey
Industry News & Research
…survey is a follow up to the surveys done in 2015 and 2018. The input from patients and families helped HTCs identify areas where they may have strengths and where…
FAQ: Proposed Changes to the FDA Blood Donation Policy
Industry News & Research
…individual risk assessment for blood donations, while continuing to safeguard U.S. blood supply. U.S. Food and Drug Administration. Retrieved February 16, 2023, from https://www.fda.gov/news-events/press-announcements/fda-proposes-individual-risk-assessment-blood-donations-while-continuing-safeguard-us-blood-supply Schulman, R. (2023, January 31). FDA issues…
uniQure and CSL Behring Announce Primary Endpoint Achieved in HOPE-B Pivotal Trial of Etranacogene Dezaparvovec Gene Therapy in Patients with Hemophilia B
Industry News & Research
…with severe medical needs, today announced that etranacogene dezaparvovec, an investigational adeno-associated virus five (AAV5)-based gene therapy for the treatment of patients with severe to moderately severe hemophilia B, achieved…