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FitFactor: Enjoying Summer

Summer is in full swing, and with so many fun things to do outside, it’s easy to act first – think later. But the hot summer months bring a certain level of risk, so here are a few precautions to take before heading outside. Heat and Sun: We’ve all been there – we spend the […]

Intern Introspective: A Week in the Life

The halfway point of our Policy and Government Relations Internship program is an excellent time for the interns to reflect on the first five weeks of their internship. La’Brittinee and Paul break down what an average week looks like for them as an HFA intern. Paul: After our first action packed week of the internship […]

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Bleeding Disorders Organizations Urge Senators to Vote No on Better Care Reconciliation Act

  For the past few days, our organizations have been encouraging you to call, tweet and email your Senators to vote No on the Better Care Reconciliation Act (BCRA).  On June 27th, Senate Majority Leader Mitch McConnell delayed the Senate vote on the bill but the vote could occur quickly if Leader McConnell is able […]

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Infusing Love: As He Climbs On the Bus

By now, for most of us another school year has come to an end. For me this usually means complete and utter joy! No more homework, no more early wakes up to catch the bus, no more worrying about clean PE uniforms, and the list goes on and on. Nicholas just finished the 8th grade. […]

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Dear Addy: Coverage for New Therapies

Dear Addy, I want to switch to a new hemophilia therapy and, though my doctor has prescribed the product, my insurer won’t authorize coverage. How can I get this covered? Signed, Concerned Consumer Dear Consumer, When new therapies come on the market, there is often a lag before health plans add those products to their […]

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ACTION ALERT: Ask Your Senators to Vote NO on BCRA!

On Thursday, June 22, 2017, the Senate leadership released a “discussion draft” of its version of legislation to repeal the Affordable Care Act (ACA). Despite promises from numerous lawmakers, the Senate bill in fact builds off the much criticized, House-passed American Health Care Act (AHCA). The Senate discussion draft would, among other things: Undermine protections for […]

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Infusing Love: Change of Plans

  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 […]

Fatherhood & Hemophilia

Being a father has been the most challenging and most rewarding task God has ever asked of me. I would do it all over again in a heartbeat. I have found the relationship between my daughter, Bethany, and me to be such paradox at times, but now that we’re both adults, I can’t express how […]

Intern Introspective: Fly In Recap

Earlier this summer, we introduced you to La’Brittinee and Paul, our summer Policy interns. They have been busy all over DC, attending Congressional hearings and learning the ropes of working for a national organization. During their first week, they got to experience first-hand the planning and execution of our 4th Annual Patient Fly-In. Below are […]

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Infusing Love: Wonder Women

  Motherhood is hard work, and often, moms don’t give themselves credit where credit is due. As moms, we need to brag about ourselves and celebrate our victories. We asked our Infusing Love bloggers to share those motherhood moments where they thought to themselves, “Yeah, I’m owning this mom thing.” Try to think of your […]

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