News & Perspectives

Infusing Love: Life’s Little Surprises

March 14, 2018

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 […]

FDA Advises CSL Behring Their Promotional Materials are Misleading

March 6, 2018

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 […]

FitFactor: Kick March Off Right with Balanced Meals

March 5, 2018

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: Bleeding Disorders Awareness Month

March 5, 2018

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 […]

Infusing Love: Talk With Your Children

February 28, 2018

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, […]

Novo Nordisk Launches Rebinyn in the United States for People with Hemophilia B

February 21, 2018

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: Bullied for Bruising

February 20, 2018

  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 […]

Infusing Love: Am I a Carrier?

February 14, 2018

Does life ever make sense? Do we really know the answers to why things actually happen? Losing my daughter, Sydney, nine days shy of her second birthday due to SUDC (Sudden Unexplained Death in a Child), pretty much means there is no answer to why. But my family decided to welcome another child into the […]

FitFactor: Functional Training – Strengthen Joints and Muscles to Improve Everyday Movements

February 5, 2018

Functional training exercises train your muscles to work together and prepare you for daily tasks by simulating common movements you might do at home, at work or in sports. By using basic movement patterns like pushing, pulling, squatting and carrying, you build stability, strength and mobility that will in turn help with your daily movements. […]

Dear Addy: Legislative Day Toolkit

February 5, 2018

Dear Addy, I’m participating in an Advocacy Day with my local bleeding disorders organization this month. I have limited experience with legislative advocacy and it’s been a long time since I took a civics class! Could you share insight on what to expect and how to prepare? Signed, Proactive Participant Dear Participant, This is a […]

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