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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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Dear Addy: History

Dear Addy, My daughter has informed me that most people in her generation don’t know anything about AIDS, Hemophilia, or Ryan White. I find this pretty upsetting. How can we educate the next generation about the history of the bleeding disorders community? Sincerely, Old Enough to Remember Dear Remembrance, This is a great question and […]

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Infusing Love: Meet Stephanie

As parents, we are always talking about the safety of our kids, families, cars, food, neighborhoods, churches, malls etc.  Let’s face it: our world is not as “safe” as it used to be, except when it comes to hemophilia! As a mother of a very active two-year-old, a sister of a stubborn 40-year-old, and the niece […]

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Fit Factor: This Summer, Keep Fit With The Fam!

With Father’s Day around the corner, now is the time to start thinking up fun, active ways to spend time with your dad. This year, add a new activity to do to make Father’s Day special, like climbing a mountain or going bird watching. Being physically active with your dad (and your family in general), […]

Intern Introspective: Introducing La’Brittinee and Paul

Earlier this year, we opened applications for a ten-week policy & government relations internship* for this summer. We are excited to introduce you to the two candidates that we selected! La’Brittinee & Paul are part of the bleeding disorders community and have been chosen because of their leadership qualities and interest in the field of […]

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