Hemophilia Federation of America is a national nonprofit organization that assists, educates, and advocates for the bleeding disorders community.
HFA was informed by Genentech on March 26, 2018, that a total of five patient deaths have occurred while the patients were using Hemlibra (emicizumab-kxwh). Genentech has little information that they can presently share about the circumstances surrounding the most recent patient deaths; however, Genentech could confirm that the patients had received Hemlibra as part of compassionate use and expanded patient access. Genentech has a Medical Communications line at 1(800)-821-8590 for patients, concerned community members, and healthcare providers who seek further information. […]
Dear Addy, I’ve heard writing an op-ed for my local newspaper is a good way to spread awareness about bleeding disorders. I’d like to submit a piece during Bleeding Disorders Awareness Month. Can you offer tips for submitting my story? Signed, Ready-to-Write Dear Writer, Writing an op-ed or opinion piece is a great way to […]
[Reposted from January 16, 2018] In the past few weeks, we have received many inquiries regarding the scope of the injunction Shire is seeking in its lawsuit against Genentech/Roche. Certain information has become public during this period that enables NHF and HFA to provide some limited guidance as to the scope of the injunction that […]
My family has very quiet about our family history with hemophilia. I was 2 years old when my grandfather passed away, so I knew very little about what he went through or what it meant to be a carrier, other than the result could be having a son with hemophilia. I was excited when we […]
Note: The following is a summary of a letter dated Feb. 27, 2018, from the US Food and Drug Administration (FDA) to CSL Behring. You can read the original letter here. The FDA has advised CSL Behring that the company’s promotional materials make misleading claims about the effectiveness of its Idelvion (Factor IX) product. “Such […]
Not only is March Bleeding Disorders Awareness Month, but it has also been designated National Nutrition Month! Take this time to evaluate your current eating habits. How many healthy foods are you eating consistently? What are you lacking? Do you eat too much of one thing? There is always room for improvement when it comes […]
Dear Addy, I’ve seen HFA’s Facebook posts about Bleeding Disorders Awareness Month. Can you tell me more about it and how I can get involved? Signed, Attentive Advocate Dear Attentive, For more than 30 years, the bleeding disorders community celebrated March as the unofficial Hemophilia Awareness Month. In 2016, this designation become official when the […]
Disclaimer: At HFA, we value all opinions. This blog only reflects only the opinion and experiences of the individual mother/writer. We encourage you to talk with your children about a school safety plan, and have provided a resource at the end of this blog entry. ________________________________________ Around 11 AM, on April 20, 1999, in Littleton, […]
Note: The following is an excerpt from a press release from Novo Nordisk. Read the full press release here. Novo Nordisk, a global healthcare company, today announced that Rebinyn, Coagulation Factor IX (Recombinant), GlycoPEGylated, is now available in the United States for the treatment of hemophilia B. Rebinyn is an extended half-life injectable medicine used to […]
Dear Addy, My eleven-year-old son recently shared that he’s being bullied at school because of bruising caused by his bleeding disorder. How can I help him educate his classmates about hemophilia and prevent future bullying? As much as I want to protect my son, I also know that I need to empower him to […]
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