News
BioMarin Shares Community Update for Valoctocogene Roxaparvovec
Industry News & Research
Biomarin recently provided an “Update for the Hemophilia Community,” on the ongoing clinical trial program for its investigational hemophilia A gene therapy,…
Pain Management for Adults
Living with a Bleeding Disorder, Pain Management
Pain is a serious medical concern in America. For those with a bleeding disorder, pain as a result of a bleeding episode…
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…
Comprehensive Pain Management: The Old and the New
Health and Well Being, Living with a Bleeding Disorder
In this video, pain management specialist, Dr. Kim Mauer of Oregon Health and Science University, provides an overview of current treatments available…
Are Nasal Swabs in At-Home COVID Tests Safe for People with Bleeding Disorders?
COVID-19
by: Michael Hickey How to stay safe from potential testing-related bleeds. It’s 2022 and COVID-19 is, unfortunately, still around. Of course, things…
Record-Keeping Tips for the Bleeding Disorders Community
Health and Well Being, Living with a Bleeding Disorder
by: Michael Hickey Keeping an accurate treatment log is an essential part of managing a bleeding disorder. Here’s how you can do…
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
HFA and 25 other patient groups issued the following statement in response to Wednesday’s court ruling in Braidwood v. Becerra (a lawsuit formerly known…
Rare Factor X Deficiency Survey Shows Disparity in Care
Industry News & Research
Initial data from the survey were presented at the recent Thrombosis and Hemostasis Summit of North America and NHF’s Bleeding Disorders Conference…
FDA Grants Priority Review for Sanofi’s BIVV001
Industry News & Research
BIVV001 is a recombinant factor VIII therapy (rFVIII) developed for the prevention of bleeding episodes in hemophilia A patients via once weekly…
GLHF’s Camp Klotty Pine Welcomed Back Campers in August for Another Successful Year!
GLHF News
On August 8, GLHF’s Camp Klotty Pine welcomed 42 campers from across Wisconsin for an unforgettable week. Each summer, we watch kids…
von Willebrand Disease (VWD) and Iron Deficiecy – Speaker: Bethany Samuelson, M.D.
Health and Well Being, Industry News & Research, Living with a Bleeding Disorder
In this video, Dr. Bethany Samuelson Bannow, of Oregon Health & Science University, discusses the role of iron in the body, the…
Gene Therapy and Bleeding Disorders: Making Sense of It All
Health and Well Being, Industry News & Research
Gene Therapy is definitely a dominant topic in the bleeding disorders community, with new articles being published regularly. Read some of the…
How Does the Supreme Court’s Ruling on the Reversal of Roe vs. Wade Impact the Bleeding Disorders Community?
Advocacy & Legislation
There are many questions regarding the affects the June Supreme Court decision could have on the bleeding disorders community – including genetic testing and…
GLHF Partners with Local Bars and Restaurants to Raise Funds for the Bleeding Disorders Community. Join Us November 9 for Bingo Night at Hamburger Mary’s – and Let Us Know if You Would Like to Sponsor an Event!
GLHF News
GLHF partnered with Just J’s in West Allis for their first Mark Monty Memorial Poker Run on August 14. Riders enjoyed breakfast…
Supreme Court Decision and Genetic Testing
Health and Well Being, Industry News & Research
by: Laurie Kelley Thoughts on how the Supreme Court decision on abortion might affect genetic testing outcomes. Read more here. The recent…
Does Gene Therapy Face Uphill Battle? Gene Therapies for Hemophilia Treatment Will Face Strong Market Headwinds, Research Suggests
Industry News & Research
Solid market position of Hemlibra and strong prescriber interest in RNAi and TFPI treatment options, combined with patient concerns regarding gene therapies,…
Get Ready for the Hemocraft ™ Challenge! Loosely Based off of the Hit Video Game Minecraft, Hemocraft Teaches Kids the Importance of Staying Prepared and Sticking to a Treatment Plan!
Living with a Bleeding Disorder
What is Hemocraft ™? In partnership with the Entrepreneurial Game Studio at Drexel University, the National Hemophilia Foundation, and members of the…
Gallery Captures Hemophilia Lives: Photographer Rankin Captures The Humanity in People with Hemophilia
Health and Well Being, Living with a Bleeding Disorder
“Portraits of Progress” is a project in partnership with CSL Behring that charted 60 years in the fight against hemophilia, and that…
Gene Therapy and Bleeding Disorders: Where Are We Now, and What’s on the Horizon?
Industry News & Research
The National Hemophilia Foundation’s 16th Workshop on Novel Technologies and Gene Transfer for Hemophilia, held in November, addressed these questions and more….
Hemophilia B— An Excellent Candidate for Gene Therapy
Industry News & Research
Current hemophilia B treatments offer strong protection from bleeds, but impact patient lifestyle and require consistent infusions to keep protection levels high.1…
Making Sense of It All – Gene Therapy
Industry News & Research
What exactly is a gene? What happens when genes mutate? And can gene therapy research help solve problems related to mutations? Learn…
Paper Features Q&A Resource on Shared Decision Making and Gene Therapy
Industry News & Research
The Q&A resource highlighted here is meant to encompass all stages of a patient’s decision making journey in gene therapy. As investigational…
BioMarin Presents Abstract on Vector DNA Transmission Risk at ISTH
Industry News & Research
The focus of the abstract is the investigational hemophilia A gene therapy, valoctocogene roxaparvovec. BioMarin recently shared findings from a phase 3…
The High Cost of Hemophilia
Advocacy & Legislation, Health and Well Being, Industry News & Research
Just one bleed in people with severe hemophilia A receiving prophylaxis has the potential to negatively affect health-related quality of life, and raise…