News
Managing Bleeding Disorders Requires Attention to Mental Health
Health and Well Being, Living with a Bleeding Disorder
by: Jennifer Lynne It’s easy to spot physical damage, such as swollen joints, nosebleeds, limps, and bruises, when one suffers from a…
Anxiety, Depression Need Better Management in Hemophilia: Survey
Health and Well Being, Industry News & Research, Living with a Bleeding Disorder
by: Lindsey Shapiro Ph.D. Symptoms of pain, anxiety, and depression generally increased with disease severity in people with hemophilia and were also associated with…
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…
Meet Dr. Bosula Oluwole
Industry News & Research
Dr. Oluwole is a recent JML Fellowship recipient. Watch Dr. Oluwole’s video, Dedicated to Finding a Cure for Sickle Cell Disease, here….
Pfizer Reports First Quarter 2002 Update of Gene Therapy Trial
Industry News & Research
Read the original press release here: https://s28.q4cdn.com/781576035/files/doc_financials/2022/q1/Q1-2022-PFE-Earnings-Release.pdf During a recent quarterly stakeholder report, Pfizer announced that in March 2022 the US Food and…
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…
What Older People with Bleeding Disorders Need to Know About Osteoporosis
Health and Well Being, Living with a Bleeding Disorder
Compared with other groups, people with hemophilia have a higher risk of the disease. by: Kathryn Anne Stewart Osteoporosis, a disease of…
6 Facts About Women and Hemophilia
Health and Well Being, Living with a Bleeding Disorder
Why it often goes misdiagnosed, the most common symptoms, and more. 1. Women with hemophilia are often undiagnosed or misdiagnosed Historically hemophilia…
Bleeding Disorders A to Z: How Bleeding Disorders Are Diagnosed
Health and Well Being, Industry News & Research
Here’s a rundown of the various blood tests providers use to diagnose hemophilia, vonWillebrand Disease and other bleeding disorders. by: Michael Hickey…
Hemophilia History: The Romanov Family – Insights From Historian Dr. Helen Rappaport
Industry News & Research, Living with a Bleeding Disorder
Insights from historian Dr. Helen Rappaport – NHF sat down with historian Dr. Helen Rappaport to learn more about how hemophilia impacted…
The ACA’s “Family Glitch” – What it is and How it Could Impact You
Industry News & Research
The so-called “family glitch” is one of the persistent deficiencies in the Affordable Care Act. In their end-of-April post, the Hemophilia Federation…
First Patient Dosed in Freeline’s Dose-Confirmation Trial for Hemophilia B Gene Therapy
Industry News & Research
The company’s investigational gene therapy has been developed for individuals with severe or moderately severe hemophilia B. The UK-based biotechnology company Freeline…
NHLBI Grant Supports Scientific Research to Enhance Hemophilia A Gene Therapies
Industry News & Research
The new grant will fund basic and translational studies to improve gene therapies for hemophilia A. A group of investigators are embarking…
New Government Funded Research Program Created to Help Improve Gene Therapies for People with Hemophilia A
Industry News & Research
A group of investigators are embarking on a new research program designed to unpack some of the outstanding fundamental questions associated with…
Medicaid Renewals Post Pandemic
Industry News & Research
Government health agencies have begun preparing for the end of the COVID-19 public health emergency. When the emergency period ends, state Medicaid…
Is Your Child Ready to Embrace Camp This Year? Join us for Camp Klotty Pine August 8-13!
GLHF News
Each camper arrives at GLHF’s Camp Klotty Pine feeling different about the week ahead, but all campers leave feeling like they are…
Join us for GLHF’s GooseChase Challenge Week. Help us Spread Awareness for the Global and Local Bleeding Disorders Community!
GLHF News
To commemorate World Hemophilia Day, we’re challenging the Wisconsin Bleeding Disorders Community to a friendly game of gooseChase! During the week of…
BioMarin Provides Update to Ongoing Phase 3 Hemophilia A Gene Therapy Study
Industry News & Research
An update for the hemophilia community from BioMarin, regarding the ongoing Phase 3 BioMarin hemophilia A gene therapy study, and a serious…
Sanofi and SOBI Announce Results of XTEND-1 Phase 3 Study
Industry News & Research
Read the original press pelease here. Efanesoctocog alfa met primary and key secondary endpoints in pivotal study in hemophilia A, demonstrating superiority to prior…
Freeline Announces First Patient Doses in Hemophilia B Trial
Industry News & Research
Freeline TherapeuticsHoldings plc announced that the first patient was dosed in its Phase 1/2 B-LIEVE dose-confirmation clinical trial of FLT180a for the…
An Update on Gene Therapy for Hemophilia
Industry News & Research
Answers to common questions about this potentially game-changing treatment. After several decades of research, gene therapy for hemophilia is moving closer to…
Advocating for Your Care in the Emergency Room
Health and Well Being, Living with a Bleeding Disorder
by: Lena Volland, PT, Ph.D.(c). In this video, Lena Volland, PT, DPT, Director of Education at the NHF, discusses how to prepare…
Hemophilia A vs. B: What’s the Difference?
Industry News & Research, Living with a Bleeding Disorder
Much is the same when it comes to hemophilia A and B, but a few key differences change how common—and how treatable—they…
Ask a Social Worker: How Can I Be an Advocate for the Hemophilia Community?
Health and Well Being, Living with a Bleeding Disorder
Advice for people who are looking to help raise awareness. by: Bobby Korathu, MSSA, LCSW. Korathu is a social worker at the…