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Infusing Love: Six Lessons Learned

  A lot has changed since my daughter was diagnosed with a platelet storage pool deficiency in 2011. Initially, there was little information and case studies to look to for reassurance. Not having a treatment plan led to many fears, doubts, and unknowns and wondering if I could make it through another injury or trip […]

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Infusing Love: The Right Time

  There is this one conversation I’ve had repeatedly with dozens of parents over the past ten years. It always revolves around our desire to be protective and shelter our kids. A child’s early years should feel safe. However, we know they cannot stay innocent forever. We do want them to grow up to be […]

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7 Ways to Stay Active in Winter

We all know that working out in the winter can feel like an impossible feat at times. However, once you start making it part of your regular routine, it’ll turn into a simple task and become easier to sustain through other parts of year when the weather isn’t so harsh. Keeping your body healthy and […]

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Dear Addy: Out-of-Pocket Expenses

  Dear Addy, I just got my daughter’s January EOB, and I realized that my family is now responsible for up to $14,300 in out-of-pocket (OOP) expenses. Why did this amount go up $600, even though we kept our same insurance? And how can I afford this?!? HELP! Signed, Anxious about OOPs Dear Anxious, High […]

Infusing Love: Bleeds Hurt

  A couple of months ago, my 8th grade son with hemophilia had “Future Bruin” night at the high school he will be attending next year. Any time we have to think about making a school move with him it induces anxiety for me as I start thinking about the process we’ll have to go […]

Industry News

Bioverativ Officially Spins-Off of Biogen’s Hemophilia Business

Note: The following is an edited version of a press release from Bioverativ. Read the press release from Bioverativ in it’s entirety here. Today, February 1, 2017, Bioverativ launched as an independent, global biotechnology company focused on the discovery, development, and commercialization of innovative therapies for hemophilia and other rare blood disorders. Bioverativ is formed by a spin-off of Biogen’s […]

Industry News

UniQure Receives FDA Breakthrough Designation of AMT-060 Investigational Gene Therapy

______________________________________________________________________________ Note: The following is edited from a press release from UniQure. Read the full press release in it’s entirety here. UniQure announced that AMT-060,  its proprietary, investigational gene therapy in patients with severe hemophilia B, has received Breakthrough Therapy designation by the U.S. Food and Drug Administration (FDA).  This designation is based on results from the […]

Millennials Get Busy- Advocacy for Young Adults

By Sarah Shinkman Learning how to advocate is an important life skill at any age. Whether you are practicing personal, peer, or group advocacy, you have the power to influence decisions that may affect you and others. HFA’s final Young Adult Hangout of 2016 featured two community advocates and a health insurance overview by Erin […]

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Infusing Love: I’ll Be Ready

Every day, I am reminded of how quickly time passes. My kids will only be little for a very short period of time. As working parents, we always tend to wish the days away in order to get to the weekends when we can take a deep breath, relax, and prep for another busy week […]

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Okay, So What Can We Do?

By Lori Long and Sarah Shinkman “Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.” -Margaret Mead To find an example of the type of group Margaret Mead speaks about in her famous quote, look no further than our bleeding disorders community. […]

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Assisting and Advocating for the Bleeding Disorders Community