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New Hemophilia Fact Sheet Now Available
Industry News & Research, Living with a Bleeding Disorder
…HANDI homepage for additional information, including answers to frequently asked questions on topics that speak to the inherited bleeding disorders community. Contact NBDF for additional information. Source: National Bleeding Disorders Foundation, March 2024…
Ask a Social Worker: How Can I Heal From Medical Trauma?
Health and Well Being, Living with a Bleeding Disorder
Advice on how to cope with post-traumatic stress disorder that’s related to a medical event. Ask a Social Worker is a monthly column featuring questions from the community and answers…
Ask a Social Worker: How Dangerous Is Cutting for Someone with Hemophilia?
Health and Well Being, Living with a Bleeding Disorder
Understanding the reasons why people self-harm, and what you can do to help. Ask a Social Worker is a monthly column featuring questions from the community and answers from members…
Ask a Social Worker: How Can I Be an Advocate for the Hemophilia Community?
Health and Well Being, Living with a Bleeding Disorder
…and a member of the Social Work Working Group. Ask a Social Worker is a monthly column featuring questions from the community and answers from members of NHF’s Social Work…
Living with Bleeding Disorders in the Time of COVID
COVID-19, Living with a Bleeding Disorder
…disorders, family members and healthcare providers in the bleeding disorders community have had to make adjustments to every aspect of their lives. Three members of the bleeding disorders community who…
Should People with Hemophilia Get the COVID-19 Vaccine?
COVID-19
Answers for the bleeding disorders community to frequently asked questions about the vaccine. Read more. Source: National Hemophilia Foundation, HemaWare….
Comments From NHF’s Dr. Leonard Valentino About the COVID-19 Vaccine
COVID-19, Industry News & Research
…companies get authorization, the US government could begin distributing the vaccines before the end of December. The speed of the development and approval of these vaccines is like nothing we’ve…
Sangamo Announces First Patient Treated in Hemophilia B Gene Therapy Trial
Industry News & Research
Sangamo Therapeutics, Inc. recently announced it has treated the first patient in a Phase 1/2 clinical trial evaluating SB-FIX, the company’s investigational gene therapy for patients with hemophilia B. This…
New Data Shows Eptacog Beta Safe and Effective in Pediatric Patients
Industry News & Research
Newly published data from a phase 3 clinical study suggests that the recombinant factor VIIa bypassing agent (BPA) eptacog beta was used to safely and effectively treat and control bleeding…
New Data Shows Eptacog Beta Safe and Effective in Pediatric Patients
Industry News & Research
Newly published data from a phase 3 clinical study suggests that the recombinant factor VIIa bypassing agent (BPA) eptacog beta was used to safely and effectively treat and control bleeding…
GLHF Sponsors Inaugural Consumer Empowerment Medical Symposium
GLHF News
…bleeding disorders community in both personal and imperative ways every year. GLHF brought in well respected national speakers, Participants heard about the latest emerging treatments, therapies and research from recognized…
Does Gene Therapy Face Uphill Battle? Gene Therapies for Hemophilia Treatment Will Face Strong Market Headwinds, Research Suggests
Industry News & Research
…up against strong competition from increased use of Hemlibra, and similar products coming to market. Visit here for more information. Source: The Communiqué – August 2022, LA Kelley Communications, Inc….
World Hemophilia Day 2024 Theme Revealed
Advocacy & Legislation, Health and Well Being, Living with a Bleeding Disorder
On April 17, 2024, the global bleeding disorders community will come together to celebrate World Hemophilia Day. The theme of the event this year is “Equitable access for all: recognizing…
Cell Therapy Hits a Stumbling Block
Industry News & Research
…community. Source: Hemablog, The Communique’, February 2022 Paul Clement is a science writer for the hemophilia community who enjoyed a long career as a high school science teacher. He is…
GLHF Needs Your Support! Donate Today!
GLHF News
…our mission been more relevant and essential: To Educate, Support and Advocate for the Bleeding Disorders Community of Wisconsin. While the world looks vastly different, our programs are still critical….
Physical Health, Mental Health and Exercise: Let’s Keep it Positive!
COVID-19
…ready to talk about what’s bothering them. This guide covers how you can make a glitter jar, as well as how to use it with your kids. You can learn…
Assessing Risk During the Reopening
COVID-19
…virus. Thinking about activities and behavior in terms of risk reduction, rather than risk elimination, can help guide you as you navigate reopening in your community. Read these helpful tips!…
Casebia Presents Dual Approach to Gene Therapy
Gene Therapy, Industry News & Research, Living with a Bleeding Disorder
Cambridge, Massachusetts-based Casebia Therapeutics recently presented new research on a novel therapy being developed for patients with hemophilia A. Casebia Therapeutics is the product of a joint venture between Bayer…
To Play or Not to Play?
Living with a Bleeding Disorder
…someone to help us make sense of how we’d navigate the coming years. As parents, we had to make a decision: either let Bubba play, or begin to guide his…
HTC Investigators Look at Rates of Cardiovascular Disease in Hemophilia Patients
Industry News & Research
…collected medical records and patient interviews, then compared the HTC data with unaffected men of comparable age ranges. The comparison data were drawn primarily from the US Atherosclerosis Risk in…
BioMarin Provides Trial Updates for Hemophilia A Gene Therapy
Industry News & Research
…program associated with valoctocogene roxaparvovec was originally licensed in February 2013 from the University College London and St. Jude Children’s Research Hospital in Memphis, TN, and has since been developed…
WFH Lead Research Points to Higher Global Hemophilia Prevalence
Industry News & Research
…higher than the previous estimates. Findings from this eye-opening study were published in the Annals of Internal Medicine. WFH recognized that having a clearer understanding of hemophilia prevalence will only…
WFH Lead Research Points to Higher Global Hemophilia Prevalence
Industry News & Research
…higher than the previous estimates. Findings from this eye-opening study were published in the Annals of Internal Medicine. WFH recognized that having a clearer understanding of hemophilia prevalence will only…
Pfizer and Biontech Dose First Participants In the COVID-19 Vaccine Development Program
Industry News & Research
…trial is part of a global development program, and the dosing of the first cohort in Germany was completed last week. The Phase 1/2 study is designed to determine the…