April 19, 2018April 18, 2018

Finding Our Way, with Community

Columns, In the Twinkling of an Eye - a Column by Joe MacDonald

I held my son, my firstborn, in my arms. From outward appearances, no one could guess that he had a bleeding disorder. Some moments, I forgot about his diagnosis. ... Read more

April 19, 2018April 19, 2018

CSL Behring Donates Life-Saving Medicines to Developing Countries on World Hemophilia Day

News

CSL Behring marked World Hemophilia Day April 17 by shipping more than 10 million international units (IUs) of its medicines to treat hemophilia A to developing countries through the nonprofit World Federation ... Read more

April 18, 2018April 17, 2018

A Month’s Supply and Feeling Lost

Columns, Hemophilia 24/7 - a Column by Cazandra Campos-MacDonald

I couldn’t believe Caeleb was about to get his first dose of Hemlibra (emicizumab-kxwh). I have been following several people whose children participated in the Hemlibra study (NCT02622321) before ... Read more

April 18, 2018April 18, 2018

Hemlibra Named a Breakthrough Therapy for Hemophilia A Without Inhibitors

News

The U.S. Food and Drug Administration granted breakthrough therapy designation to Genentech’s Hemlibra (emicizumab-kxwh) for people with hemophilia A without factor VIII inhibitors. Hemlibra is designed to bring together ... Read more

April 16, 2018April 16, 2018

Catalyst Adding Sixth Group to Phase 1/2 Trial of Its Hemophilia B Therapy

News

The Korean Ministry of Food and Drug Safety has agreed to Catalyst Biosciences’ request to add a sixth group to a Phase 1/2 clinical trial of its hemophilia B treatment. ... Read more

April 13, 2018April 13, 2018

Not Having to Refrigerate a Clotting Factor Increases Satisfaction with It, Study Finds

News

Hemophilia A patients who do not refrigerate their bleeding prevention therapy are more satisfied with it and report fewer restrictions on their daily activities, a study finds. Researchers also ... Read more

April 12, 2018

NIH Agency Pioneers Collaborative Research into Rare Diseases

News

A little-known government entity within the National Institutes of Health (NIH) is helping to lead U.S. efforts to speed up the development of therapies for some 7,000 rare diseases. ... Read more

April 11, 2018April 10, 2018

Moving Is Complicated: Here Are a Few Tips to Help You Plan

Columns, Hemophilia 24/7 - a Column by Cazandra Campos-MacDonald

When my sons were born and diagnosed with hemophilia, we lived in Houston and had access to the Gulf States Hemophilia and Thrombophilia Center. I had access to treatment and ... Read more

April 11, 2018April 11, 2018

Exercise Approach Called Programmed Sports Therapy Can Help Hemophilia Patients, Study Suggests

News

Exercise can be an important part of recovering from hemophilia and continuing to keep a handle on it, according to a German review of previous research. The study, “Programmed ... Read more

April 9, 2018April 9, 2018

New Methods Can Help Identify Best Preventive Regimen for Children with Hemophilia A, Study Says

News

Researchers are creating a free web-based calculator that will help physicians determine the best patient-specific preventive regimens for children with hemophilia, according to a recent study. The tool is ... Read more

April 6, 2018April 6, 2018

CVS Health Donates $260,000 To Bleeding Disorder Programs

News

In honor of Bleeding Disorder Awareness Month, celebrated in March, CVS Health is donating more than $260,000 to national and local hemophilia and bleeding disorder programs across the United ... Read more

April 5, 2018April 4, 2018

My First Moments

Columns, In the Twinkling of an Eye - a Column by Joe MacDonald

There are moments that forever alter lives. Sometimes we celebrate educational goals, while others encounter the excitement of new love. Other times leave us breathless as we attempt to ... Read more