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FDA Approves First Single Chain Product for Hemophilia A

Note: The below is an edited version of a press release by CSL Behring. The original release can be read in it’s entirety here. KING OF PRUSSIA, Pa., May 26, 2016 — CSL Behring announced today that the U.S. Food and Drug Administration (FDA) has approved AFSTYLA [Antihemophilic Factor (Recombinant), Single Chain], its novel long-lasting recombinant factor […]

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Emicizumab Study Results Released in New England Journal of Medicine

Note: The New England Journal of Medicine released an article outlining the results of a study of a new drug, Emicizumab (ACE910, Chugai Pharmaceuticals), that shows reduced bleeding in patients with severe hemophilia A. Read the full article, Factor VIII–Mimetic Function of Humanized Bispecific Antibody in Hemophilia A, in the New England Journal of Medicine. This video […]

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Infusing Love: Out of the Mouths of Babes

When Thomas was in preschool, my family and I attended our first HFA Symposium. One of the educational sessions featured a panel of speakers who shared how to best prepare yourself, your child, and your school for a child with hemophilia. I took copious notes during that session because we were only two years away […]

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Conquering Mountains

  My beautiful wife Jackie, and I have three boys: Desmond, 8-years-old, Liam, 5-years-old and Patrick, 3-years-old. Patrick has severe hemophilia A, and inhibitors. We live in middle Georgia. Until three years ago we knew nothing about hemophilia. We had no family history and it was the furthest thing from our minds as parents. We have two strong, […]

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Infusing Love: My Blood Gang

Not related by blood. Family because of it. I had a button made with this quote when Max participated in the Beards for Bleeders fund-raiser two years ago. Something I have gained from the bleeding disorder community is an oddly mismatched, but amazing group of BFFs. My gang, as I like to call them. What […]

Op-Ed: Serious ACA Wrinkle Jeopardizes Help for Chronic Patients

Note: The following is an op-ed written by Charlene Cowell, executive Director of HFA member organization Hemophilia of North Carolina. This article was originally published by the Raleigh News & Observer. To learn more about this issue affecting third party premium assistance, visit our Advocacy page. Despite a significant uptick in the number of insured […]

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Infusing Love: Isolated No More

Until recently my husband and I didn’t realize how alone Chris felt growing up with hemophilia. He had support from family, friends, coaches, teammates, the treatment staff, and us. Yet he didn’t have anyone to talk with that really understood what it was like to have hemophilia. We tried our best to not treat Chris […]

3 Great Smoothies for National Beverage Day

May 6, 2016 is National Beverage Day. Why not celebrate with these three delicious smoothie recipes from HFA’s FitFactor partnership with the folks over at SuperKidsBook.com? Berry Beet Smoothie 1/2 c. Vanilla yogurt 1 Banana 1/2 c. Fresh or frozen Strawberries 1/4 c. Cooked beets Banana Orange Delight 1/4 c. Plain yogurt 1/2 c. Orange […]

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Infusing Love: I Get To Decide

I have an incredibly sweet and endearing child. I have been told on more than one occasion by his teachers that he has a sense for other children’s feelings, he knows when children are hurting, and he makes an effort to console them. I would love to take full credit for Logan’s sweet personality, but […]

Colorado Dad Continues Advocacy Involvement

Nathan Wilkes has been advocating for his son, Thomas, who has hemophilia and an inhibitor for more than a decade. Nathan began his advocacy by simply writing an essay about his family’s struggle with lifetime caps which was sent to a limited number of contacts within state government and a few friends. He soon found […]

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