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Study Will Examine Brain Development in Young People with Hemophilia
Industry News & Research
…was the Hemophilia Growth and Development Study (HGDS), a four-year observational study designed to learn more about the impact of hemophilia and HIV on brain development. The study included 333…
To Streamline Coronavirus Vaccine and Drug Efforts, NIH and Firms Join Forces
COVID-19
…drug companies today announced a plan to stage carefully designed clinical trials of the drugs and vaccines they have decided are the highest priorities for testing and development. The public-private…
Changing Lives Through Camp
…Camp Caregiver Guide Registration Instructions REGISTER (completed registrations are due July 1, 2024) For more Information, contact: Karin Koppen, Camp Director kkoppen@glhf.org 414.937.6782 Camperships At Great Lakes Hemophilia Foundation we…
Good News! @GovEvers Signs Bipartisan #steptherapy Legislation into Law!
Advocacy & Legislation
…for all patients! Thousands of #WI patients with chronic conditions have better access to the right treatments! Please see several links for more information. https://www.nbc15.com/content/news/Evers-set-to-sign-drug-step-therapy-bill-512466942.html https://www.channel3000.com/news/evers-signs-drug-step-therapy-bill/1093564782 https://www.jsonline.com/story/news/politics/2019/07/09/tony-evers-signs-bill-making-easier-get-prescription-drugs/1684843001/ …
New Paper Published on the First National Patient Satisfaction Survey of U.S. HTCs
GLHF News, Industry News & Research
…patient satisfaction with the delivery of care is an important metric that is associated with treatment adherence and better overall health outcomes. Therefore, a first-of-its kind nationally uniform and comprehensive…
How to Keep Summer Activities Safe for Kids with Bleeding Disorders
Health and Well Being, Living with a Bleeding Disorder
…Sports and Exercise guide. Learn what she recommends. Check with Your HTC A good first step is to talk to your child’s hemophilia treatment center (HTC), Anderson says. “You can find…
How to Keep Summer Activities Safe for Kids with Bleeding Disorders
Health and Well Being, Living with a Bleeding Disorder
…Sports and Exercise guide. Here’s what she recommends. Check with Your HTC A good first step is to talk to your child’s hemophilia treatment center (HTC), Anderson says. “You can find…
The State of Mental Health on College Campuses
Health and Well Being
…available specifically for them. Source: Intelligent.com Intelligent.com is student-focused site dedicated to delivering data-driven research and insights to aid students and educational institutions nationwide. Our commitment is to foster informed…
PT Study Focuses on Comprehensive Survey of Physical Activities Risks for 101 Activities
Industry News & Research
…compared with catchers (47%) and “others” (40%), and risk of knee bleeding was substantially higher for catchers (100%) compared with pitchers (35%) and “others” (53%). When comparing soccer goalie to…
Specific Risks of COVID-19 to the Bleeding Disorders Community
COVID-19
…coming from infected persons. These droplets get into the upper respiratory tract where they establish an infection. https://www.who.int/news-room/commentaries/detail/modes-of-transmission-of-virus-causing-covid-19-implications-for-ipc-precaution-recommendations There is no information about whether persons with HIV are at increased…
BioMarin Update on the Impact of COVID-19 on Trials
COVID-19
…usual study visits available to them.” states the release. The company is also encouraging study participants who are in self-isolation to maintain communications remotely with the appropriate staff at their…
Statement: HFA Responds to Latest Gene Therapy Announcement
Gene Therapy, Industry News & Research
…remain mindful of our community’s history. We will continue our work to ensure that patient health, safety, and interests always come first. Source: Hemophilia Federation of America (HFA), August 2023…
Statement: HFA Responds to Latest Gene Therapy Announcement
Gene Therapy, Industry News & Research, Living with a Bleeding Disorder
…we remain mindful of our community’s history. We will continue our work to ensure that patient health, safety, and interests always come first. Source: Hemophilia Federation of America, June 2023…
COVID-19: Latest News and Updates
COVID-19
…we know many people in our community have questions. We compiled an FAQ based off questions we’ve received from the community and will be updating it as more information becomes…
Public Health Symposia Now Available on the NHF Website!
Industry News & Research
…of the Thalassemia Community Multidisciplinary HHT care through Hemophilia Treatment Centers: A Pilot Project Community Counts: National CDC Bleeding Disorders Surveillance Updates Community Voices in Research: Patient Reported Outcomes Watch…
Introducing GLHF’s New Website, Logo and Colors
GLHF News
…our new website last month, we’ve created updated news, community events, fundraising events, giving and resource sections, featuring content designed to serve as a source of comprehensive information. Alongside our…
Five Ordinary Items That Are Unique to Our Hemophilia Home
Living with a Bleeding Disorder
…because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, BioNews, and are intended to spark…
ACA Open Enrollment Underway
Advocacy & Legislation, Industry News & Research
Enrollment for the Affordable Care Act 2021 health insurance is now open. Open enrollment runs through Tuesday, Dec. 15, 2020. Coverage begins Jan. 1, 2021. Learn more….
Study Suggests Hemophilia Patient Preferences Evolving Along with Treatments
Health and Well Being, Industry News & Research, Living with a Bleeding Disorder
…the question – How might this evolving landscape be impacting treatment preferences for people with hemophilia? Investigators sought answers to this question in a new study, “Patient and Caregiver Preferences…
Statement from Patient Groups in Response to Court Ruling on Cost-Free Coverage of Preventive Health Services
Industry News & Research, Living with a Bleeding Disorder
…on September 7 by a federal district judge in Texas could significantly undermine access to required cost-free coverage for preventive services in the Affordable Care Act as recommended by the…
GLHF Letter to the Community on COVID-19
COVID-19, GLHF News
…as well. Our goal is to keep you informed. We will communicate using email, social media and our website. We also encourage you to refer to your state’s health department…
Pfizer and Sangamo Dose First Participant in Phase 3 Study Evaluating Hemophilia A in Gene Therapy Treatment
Industry News & Research
…Phase 3 dosing study of giroctocogene fitelparvovec is a significant achievement for Pfizer as we continue our longstanding commitment to improving care for the hemophilia community,” said Brenda Cooperstone, Chief…
Gene Therapy and Bleeding Disorders: Where Are We Now, and What’s on the Horizon?
Industry News & Research
…for Hemophilia in Washington, DC. The hybrid community of online and masked, socially distanced attendees from around the globe presented their latest bleeding disorder gene therapy research and challenged one…
Hepatocellular Cancer Screening and Gene Therapy Preparedness the Focus of New Recommendations
Gene Therapy, Industry News & Research, Living with a Bleeding Disorder
…centers prepare for commercial gene therapy, appreciating the complexities and unique considerations inherent in delivering such a novel treatment. It describes a “roadmap” for achieving preparedness, encompassing five primary components:…