News
Researchers Look at Clinical Outcomes in FXIII Babies
Industry News & Research
Individuals with factor XIII deficiency (FXIII), a very rare inherited bleeding disorder, may experience a number of symptoms including umbilical cord bleeding,…
Sigilon Releases Study Data on Hemophilia Cell Therapy
Industry News & Research
At the recent 2019 American Society of Gene and Cell Therapy Annual Meeting in Washington, DC, Sigilon Therapeutics presented data on an…
CHOP Researchers Study Factor VIIa Prophylaxis Through Gene Transfer
Industry News & Research
In a newly published study, researchers at the Children’s Hospital of Philadelphia (CHOP) described how they utilized gene transfer technology to illicit…
CMS Finalizes Policy to Limit Co-Pay Accumulator Programs
Industry News & Research
On April 18, 2019, the Centers for Medicare and Medicaid Services (CMS) released the final Notice of Benefit and Payment Parameters Rule…
New Books to Manage Hemophilia for All Ages
Living with a Bleeding Disorder
Global health education company Jumo Health is releasing four new comic books that provide contextual and age-appropriate information for children, teenagers, and…
GLHF Addresses Key Issues Impacting the Bleeding Disorders Community at Washington Days
GLHF News
In March, GLHF staff participated in the National Hemophilia Foundation’s Washington Days on Capitol Hill in Washington, D.C. “Washington Days is an…
Sangamo and Pfizer Announce Interim Trial Data for Hemophilia A Gene Therapy
Industry News & Research
Sangamo Therapeutics, Inc and Pfizer, Inc. recently announced interim data from the phase 1/2 Alta study designed to evaluate SB-525, the company’s…
New Financial and Patient Support Services for People Living With Hemophilia
Industry News & Research
The Patient Access Network (PAN) Foundation and the National Hemophilia Foundation (NHF) announced they are launching a new alliance to offer a…
17 Patient Groups Urge Appeals Court to Uphold Healthcare Law
Advocacy & Legislation
Seventeen patient groups representing millions of Americans with pre-existing conditions filed an amicus curiae (“friend-of-the-court”) brief today in the U.S. Court of Appeals for…
New CME-Accredited Activity on Evaluating Patients with Suspected VWD
Industry News & Research
Register today for a new CME-accredited educational activity on “Recognizing and Remediating von Willebrand Disease – A Case Study in Collaborative Care,” provided by Haymarket…
Give Where You Live for The Red Tie Campaign!
GLHF News
Each and every day we are thankful for supporters and community members like you. Over the years you have provided your time,…
Light it Up Red! for World Hemophilia Day, April 17
Advocacy & Legislation
Light it Up Red! for World Hemophilia Day, April 17 Last year, thousands of people united to show their support for the…
2nd Annual Madison’s Best Bloody Contest Returns April 28. Tickets on Sale Now!
GLHF News
GLHF’s Madison’s Best Bloody will be held at the Edgewater Hotel, 1001 Wisconsin Place, Madison, WI, on Sunday April 28 from 11:30…
At Wisconsin Legislative Day, We Share our Stories, Experiences and Strength with Lawmakers
Advocacy & Legislation
Last month, GLHF headed to Madison for our annual Wisconsin Legislative Day – a chance to share with lawmakers the true reality…
Milwaukee’s Best Bloody Draws Support and Awareness for the Bleeding Disorders Community
GLHF News
When GLHF started Milwaukee’s Best Bloody seven years ago, we were looking for a fresh way to raise critical funds and awareness…
Cell-based Gene Therapy May Offer Long-term Treatment for Hemophilia A, Mouse Study Suggests
Industry News & Research
Cell therapy with endothelial progenitor cells and stem cells genetically engineered to produce a functional clotting factor VIII (FVIII) may provide a…
Advocacy Priorities Established by NHF
Advocacy & Legislation
The National Hemophilia Foundation (NHF) has advocated for the needs and interests of people affected by hemophilia and related bleeding disorders for…
GLHF Launches the 2019 Red Tie Campaign
GLHF News
It’s time to put on your red ties again and join us for the 2019 Red Tie Campaign! This March, during Bleeding…
uniQure Announces Updated Data from Phase 2B Dose Confirmation of AMT-061
Industry News & Research
uniQure is excited to announce that updated data from their Phase 2B dose-confirmation study of AMT-061, an investigational gene therapy for the…
Who Makes the Decision?
Living with a Bleeding Disorder
by: Derek L. Markley It has been more than eight years since St. Jude Children’s Research Hospital, University College London, and the…
What’s the Best Way to Learn About Your Bleeding Disorder?
Living with a Bleeding Disorder
by: Laurie Kelley Our world is biased toward visual information and learning, because humans are mainly visual beings. From advertising to teaching…
NHF and Partners Announce Innovative Infusion Logging Tool
Industry News & Research
The National Hemophilia Foundation (NHF) has announced a new two-year pilot program that aims to improve the efficacy of patient infusion logs…
Online Health Information: Is It Reliable?
Industry News & Research
by: Paul Clement It’s an exciting time for people with inhibitors. In addition to bypassing agents, new products may prevent or control…
PT Study Focuses on Comprehensive Survey of Physical Activities Risks for 101 Activities
Industry News & Research
Physical therapists (PTs) at hemophilia treatment centers (HTCs) often consult with hemophilia patients about engaging in new physical activities like exercise, team/individual…