Hemophilia Federation of America is a national nonprofit organization that assists, educates and advocates for the bleeding disorders community.
I recently had the opportunity of volunteering to be one of the nurses in the infusion center at the annual HFA symposium. I had the privilege of working with two amazing nurses that work in the hemophilia community. I quickly realized that they both had so much knowledge in the hemophilia world!聽 l learned so […]
The National Hemophilia Foundation’s Medical and Scientific Advisory Council (MASAC) has released a safety information update about Emicizumab (Hemlibra), a new subcutaneous treatment for hemophilia A patients with inhibitors. This update has been released following the first report of an anti-drug antibody to Emicizumab. MASAC鈥檚 update issues recommendations for providers and patients in case of […]
Note: The following is an excerpt from a press release from Genentech. Read the full press release here. ______________________________________________________________________________________ Given the recent dialogue, we are reaching out to clarify the facts surrounding five people with聽hemophilia A with inhibitors to factor VIII who have passed away while receiving Hemlibra庐聽(emicizumab-kxwh). Since 2016, five adults with hemophilia A […]
Genentech has published a聽statement regarding patient access to Hemlibra (Emicizumab-kkwh). Read the full statement聽in its entirety聽here.
Note: The following is an edited excerpt from a press release from Genentech. To read the press release in it’s entirety, click HERE. Genentech, a member of the Roche Group, announced today that the U.S. Food and Drug Administration (FDA) has approved HEMLIBRA庐聽(emicizumab-kxwh) for routine prophylaxis to prevent or reduce the frequency of bleeding episodes […]
Note: The following is an edited version of a press release from Genentech.聽Read the press release from Genentech聽in it鈥檚 entirety here. Genentech, a member of the Roche Group, announced today that the U.S. Food and Drug Administration (FDA) has accepted the company鈥檚 Biologics License Application (BLA) and granted Priority Review for emicizumab prophylaxis (preventative) as […]
I like control. I like order. I like a plan. I like lists. Not in an overly aggressive way, but in a way that makes me feel calm. If I can plan for it, I can feel in control of it. Hemophilia does not work this way. Hemophilia and all the moving parts involved with […]
Note: The following is an edited version of a press release from Genentech.聽Read the press release from Genentech聽in it鈥檚 entirety聽here. Genentech, a member of the Roche Group, announced today that data from HAVEN 1, a Phase III study evaluating once-weekly subcutaneous emicizumab prophylaxis (preventative) in adults and adolescents with hemophilia A with inhibitors, were published […]
Genentech, a member of the Roche Group announced today positive data from the primary analysis of the Phase III HAVEN 1 study in adults and adolescents and interim analysis of the Phase III HAVEN 2 study in children evaluating once-weekly subcutaneous emicizumab prophylaxis (preventative) for the treatment of hemophilia A with inhibitors to factor VIII. […]
It’s that time of year when boys and girls go to summer camp. Church camp, art camp, band camp, sports camp and yes, hemophilia camps. My idea of camping and “roughing it” is when we stay at a hotel that is not a “suite.” When my oldest son, Julian, was nearing the age of […]
On April 16, 2017 Genentech聽announced interim results聽from the Phase III HAVEN 2 study evaluating emicizumab prophylaxis in children聽less than 12 years of age with hemophilia A and inhibitors to factor VIII. According to this Genentech’s press releases, “interim analysis after a median of 12 weeks of treatment, emicizumab prophylaxis聽showed a clinically meaningful reduction in the […]
Note: The following is an abridged聽form of an article from the聽Centers for Disease Control and Prevention(CDC). The original full-length of the article聽can be read聽here. The Centers for Disease Control and Prevention (CDC), along with researchers from聽the聽Hemophilia Inhibitor Research Study (HIRS), have recently published two articles in The Journal of Thrombosis and Haemostasis. The articles describe […]
Note: The following is edited from a press release from PRNewswire.com. Read the full press release in it鈥檚 entirety聽here. HEMA Biologics, LLC announced that the FDA has accepted the Biologics License Application(BLA) for their first potential product for commercialization in the United States.聽 The acceptance of the BLA for Coagulation Factor VIIa, Recombinant (eptacog beta […]
The senses of sound聽and smell are very powerful. Sometimes a smell can spark a memory of a wonderful meal simmering on a stove or the smell of the air from a perfect breeze on a spring day can transport us back. The sounds of elevators dinging as people anxiously wait their turn and the sliding […]
______________________________________________________________________________ Note: The following is edited from a press release from Genentech. Read the full press release in it鈥檚 entirety聽here. Genentech, a member of the Roche Group, announced that the primary endpoint has been met for the Phase III HAVEN 1 study evaluating emicizumab prophylaxis in people 12 years of age or older with hemophilia […]
______________________________________________________________________________ Note: The following is edited from a聽press release from Octapharma. Read the full press release in it鈥檚 entirety聽here. At the recent American Society of Hematology (ASH) Annual Meeting, Octapharma presented interim data from the ongoing phase 3 study,聽NuProtect. The NuProtect Study examines the immunogenicity, efficacy and safety of treatment with human cell-line derived recombinant […]
For over a year my family has lived like most everyone else in the world.聽 We get up, go to work and school, have fun, go on trips, eat and play鈥.it鈥檚 all very good.聽 Our oldest son has gone away to college and our youngest is in the fifth grade. The blessing has been […]
On June 28, 2016, the National Hemophilia Foundation’s Medical and Scientific Advisory Committee (MASAC) issued a recommendation following the published results of the聽Survey of Inhibitors in Plasma Products Exposed Toddler (SIPPET)聽The SIPPET study was published in the聽New England Journal Of Medicine (NEJM)聽in May 2016. The full text of the SIPPET study is available for a […]
On May 26 2016, the聽New England Journal Of Medicine (NEJM)聽published the results of the聽Survey of Inhibitors in Plasma Products Exposed Toddler (SIPPET)聽study. Investigators found that in a randomized study, when previously-untreated patients (PUPs) were treated with recombinant factor VIII, there was an 87% higher incidence of inhibitor development than when treated with plasma-derived factor VIII. […]
Note: The New England Journal of Medicine released an article outlining the results of a study of a new drug,聽Emicizumab (ACE910, Chugai Pharmaceuticals), that shows reduced bleeding in patients with severe hemophilia A. Read the full article,聽Factor VIII鈥揗imetic Function of Humanized Bispecific Antibody in Hemophilia A, in the New England Journal of Medicine. This video […]
There are three words that I have a love-hate relationship with. The words are spoken with good intention and they aren鈥檛 fancy, SAT prep course worthy words. They are simple words, in a simple sentence, but there鈥檚 no simple answer to the question. 鈥淗ow鈥檚 Thomas doing?鈥 It鈥檚 double-edged sword. It鈥檚 almost impossible for me to […]
Justin Levesque (pictured in the orange hat), poses with the crew aboard a ship bound for Iceland.聽 __________________________________________ Justin Levesque has severe hemophilia with an inhibitor. Justin recently had an opportunity of a lifetime when he spent nine days aboard a ship to Iceland as part of an art project that he developed. In this […]
This past weekend, the聽American Society of Hematology (ASH), a worldwide organization of 15,000+ medical and scientific experts on blood diseases,聽held their 57th Annual Meeting to discuss new treatments and research methods. During this meeting, a group of doctors from around the globe presented the findings of the Survey of Inhibitors in Plasma-Product Exposed Toddlers (SIPPET). […]
Dear Addy, I’m taking my son in for his annual visit, and I saw that MASAC issued a statement about inhibitors. Should I have him checked for one? Signed, Learning All I Can Dear Learning, Inhibitors are antibodies that the immune system develops in response to a clotting factor product used to treat a person […]
The American Society of Hemophilia (ASH) released information about their upcoming 57th ASH Annual Meeting, which will be held December 5-8, 2015 in Orlando, Florida. Included in the program information is a paper abstract about the SIPPET study (Survey of Inhibitors in Plasma-Product Exposed Toddlers.)聽A plenary session with further information will be presented at the […]
When you are in the middle of what seems like a never-ending bleed, you function in the moment, hoping that things get better soon. Living with a chronic condition has helped my family learn to look at things in a positive light, and I like to think it has helped me become someone who sees […]
Below is from a press release Apitope sent out on June 9, 2015. To read it in its entirety, click here. Apitope, the drug discovery and development company focused on disease-modifying treatments that reinstate immune tolerance, announced today that pre-clinical product candidate ATX-F8-117 has been granted Orphan Drug Status by the US Food and Drug […]
We had a tough winter. We spent more time than ever before cuddled up in an ER room watching whatever Disney movie was on the in-hospital. Doctors and nurses would rush in and out. We ate fast food and hospital food.. We coped. Because, this is our life. This is our reality. We have a […]
Kelly and Brian of Oregon never expected their son, Bubba, to have severe hemophilia A, and they certainly never expected Bubba to experience the complications of an inhibitor and chronic pain in his childhood. Kelly shared her family鈥檚 experiences with HFA with hopes that other families can learn from their experiences. How did you find […]
My son Caeleb has struggled with an inhibitor since he was 11 months old. Despite many doctors鈥 recommendations, it’s never been as “simple” as waiting to get below a 10 Bethesda Unit measurement to start immune tolerance therapy (ITT).聽 He developed a rare allergy to factor VIII and there is no known treatment or protocol […]
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