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Hepatitis: Not Just For Men

I have severe factor 1 deficiency (afibrinogenemia) and have been Hepatitis C (HCV) positive since 1998. My source of infection was one of my many cryoprecipitate infusions (cryo being the only available treatment for anyone with factor 1 deficiency until 2009, and for me until November 2014). What makes me different than most people with […]

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Infusing Love: Defining Normal

“How do you do it?” “Isn’t it difficult?” “Do you feel as though you need to wrap him in bubble wrap?” “How do you handle all of it?” Most bleeding disorders moms have had to answer those questions or something similar to them. Questions of that nature do not surprise me anymore, because what parenting […]

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Dear Addy: Joint Replacement Surgery

Dear Addy, I’m a 50-year-old with hemophilia A, who’s right elbow has seen better days. I’m in the process of researching all my surgical options before making an appointment with my HTC. At this point in my life I’m really intrigued with an elbow replacement. Do you know of any other results throughout the community? […]

Infusing Love: It’s About to Happen

When my son, Julian, began middle school, I kicked his hemophilia education into high gear.  He already knew the basics, but it was now time for him to learn how to call and order his factor, find the Hemophilia Treatment Center closest to him when on vacation, and to understand the importance of keeping the […]

Intern Introspective: A Day in the Life

The halfway point of our Policy and Government Relations Internship program is an excellent time to take stock of our interns’ first month or so. In this Intern Introspective, Cami and Eric break down what an average day in the life looks like as an HFA intern.  ___________________________________________________________________________________________ 9 am to 10 am – Cami […]

FDA Releases “Voice of the Patient” Summary from Patient-Focused Drug Development Initiative

In September 2014, the U.S. Food and Drug Administration hosted a public meeting as part of it’s Patient-Focused Drug Development initiative, a 5 year initiative to learn more from patients across a variety of disease and disorders. We were proud to be a part of this meeting and provided support to several of the patient […]

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Infusing Love: Away He Goes

During summer time, most parents feel they have some time before they have to think about an upcoming school year. However, if you are a parent of a child with hemophilia that just graduated from high school who is on his/her way to college, your worries start long before graduation. Our son Chris wanted to […]

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Dear Addy: Advocacy in Rural Communities

Dear Addy, I live in rural Wyoming and we do not have a hemophilia treatment center (HTC) in my state. How do I advocate for myself and better treatment at my local doctor’s office? Sincerely, Western Advocate ______________________________________________________________________________________ Dear Western, Whether you live in a rural or metro area without an HTC, or in a […]

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Infusing Love: More than Max’s Mom

I am a modern day success story. I never thought I could have kids. Issues that I now know were caused from my own low factor levels had doctors telling me I “would probably never be able to have children.” I set out to live my life as such. You know those lists of “have […]

Intern Introspective: Through Our Eyes

Earlier this summer, we introduced you to Eric and Camila, our summer Policy Interns. They have been busy all over DC, attending Congressional hearings, executive briefings, and much more. Recently, they got to experience first-hand the planning and execution of our 3nd Annual Patient Fly-In. Below is their take on the week. _________________________________________________________________________________ What was […]

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Assisting and Advocating for the Bleeding Disorders Community