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Dear Addy: Accumulator Adjuster Programs

Dear Addy, I get assistance with my out-of-pocket costs from the manufacturer of my clotting factor product. My insurer just notified me that it will no longer apply that assistance to my deductible and out-of-pocket maximums! Can they do that? Signed, Distressed Over Deductibles Dear Deductibles, You are running up against a new strategy that […]

Industry News

Catalyst Biosciences Initiates Phase 2 of Potential Hemophilia A and B Therapy

Note: The following is an excerpt from an article by Rare Disease Report. Read the full article in its entirety here. On Jan. 4, Catalyst Biosciences announced the initiation and open enrollment of the Phase 2 part of its Phase 2/3 program of marzeptacog alfa (activated) (MarzAA), a highly potent, subcutaneously administered Factor VIIa therapy in development for the treatment […]

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Infusing Love: Port to Adulthood

I have seen signs for the last few years, but on a cold day just before Christmas, I saw my 14-year-old son not as a little boy, but as a young man. There wasn’t anything extraordinary happening in the moment. He sat at one end of our sectional couch and I was sitting on the […]

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Infusing Love: Different Opinions Don’t Mean They Are Wrong

  “So, he’s still wearing the helmet?” The question, posed by HTC staff at our recent annual visit gave me pause. Yes, my son is almost 5 years old and still wearing his helmet any time his feet are on the floor. I know this is a controversial topic ­ I’ve seen the comment threads […]

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Dear Addy: Public Speaking

Dear Addy, I want to participate in a legislative day, but I’m a terrible public speaker. Help! Signed, Nervous Nelly Dear Nervous, You are not alone – many people worry about public speaking! Use these tips to help you become more confident and comfortable speaking during legislative meetings. Hopefully you’ll find this advice beneficial – […]

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HFA Research Presents at ASH 2017

HFA’s Research Team gave and received early an holiday gift this year: knowledge. We attended the 59th annual meeting of the American Society of Hematology (ASH) in Atlanta, Georgia, December 9-12. The unofficial song of the meeting was “Let it Snow” as that (along with the once standing Georgia Dome) is what was on the […]

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Infusing Love: In Appreciation of Providers

  It is safe to say that most of hemophilia has been unexpected. Even when you are planning for the unexpected you get another unexpected in its place, sort of a Murphy’s Law type deal. And yet, I am always finding things about hemophilia that I never expected from our experience. One of the most […]

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Fit Factor: Spice up your holiday dessert menu

Looking for a new healthy holiday dessert? This Applesauce Spice Cake has a delicious, spicy aroma and taste. It has less sugar and fat, and more fiber than most desserts. Treat it like a coffee cake to be served for brunch or for dessert with a scoop of vanilla ice cream or a dab of […]

Industry News

uniQure Announces Updated, Long-Term Clinical Data from Ongoing Phase I/II Trial of AMT-060 In Patients with Severe Hemophilia B

Note: The following is edited from a press release from Spark Therapeutics. Read the full press release in its entirety here. uniQure N.V. a leading gene therapy company advancing transformative therapies for patients with severe medical needs, announced on Dec. 11, 2017, updated results from its ongoing, dose-ranging Phase I/II trial of AMT-060, its investigational gene therapy in […]

Industry News

BioMarin Provides 1.5 years of Clinical Data for Valoctocogene Roxaparvovec Gene Therapy for Severe Hemophilia A

Note: The following is edited from a press release from Spark Therapeutics. Read the full press release in its entirety here. BioMarin Pharmaceutical Inc. announced an update to its previously reported results of an open-label Phase 1/2 study of valoctocogene roxaparvovec (formerly BMN 270), an investigational gene therapy treatment for severe hemophilia A. The data […]

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