More Natural Treatment Option for Hemophilia A Now Available!
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More Natural Treatment Option for Hemophilia A Now Available!

In September, 2015, the U.S. FDA approved NUWIQ®, a recombinant antihemophilic factor (protein essential for normal blood clothing) developed by Octapharma AG, for the treatment of hemophilia A in children…

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Why This Mom Chose “Bleeder Moms” Over Blood Relatives for Inspiration
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Why This Mom Chose “Bleeder Moms” Over Blood Relatives for Inspiration

I’ve had one hellofa tough day, but stopped abruptly with an attitude shift to feel inspired after reading an uplifting article which I know will inspire tons of moms in…

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It’s Here: Patients with Hemophilia are Increasingly Demanding Improved Treatments and It’s Working!
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It’s Here: Patients with Hemophilia are Increasingly Demanding Improved Treatments and It’s Working!

All I can say is: "No $%@#, Sherlock" when I read articles like some of the ones I’ve read recently about the status of hemophilia A and hemophilia B treatments.…

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These Grandparents Swing with Shire to Ignite Inspiration for Hemophilia!
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These Grandparents Swing with Shire to Ignite Inspiration for Hemophilia!

The Hemophilia Alliance of Maine recently co-sponsored a special event with Shire Pharmaceuticals for grandparents to join together for inspiration. The event was held on April 22nd in Maine. I…

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How to Relieve Stress by Joining with Other Women in the Hemophilia Community
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How to Relieve Stress by Joining with Other Women in the Hemophilia Community

On Saturday, April 29, 2017, a special event took place to honor women in the hemophilia community living in Idaho. Way to go, Idaho Chapter of the National Hemophilia Foundation! How…

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Editor’s Choice: Events on Events on Events! Help Raise Sjogren’s Awareness and BOS Awareness

Happy Friday Patient Worthians! April is Sjogren's Awareness Month! There was also a whole day dedicated to Bohring-Opitz Syndrome. The MDS Foundation has another upcoming event as well. Lastly, last month…

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Donate Blood in the Name of Bleeding Disorders Awareness Month
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Donate Blood in the Name of Bleeding Disorders Awareness Month

Let's talk blood donation. I recently spoke with a man from a small African country who suffers from hemophilia. He told me that when he was growing up, there was no…

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Editor’s Choice: Suddenly Sleepy and Beautifully Broken

Welcome back to Editor's Choice! This week we have an interesting take on Parkinson's treatment. We also have an empowering article from one of PW's rare disease contributors. We are all feeling the…

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Why Do People Think Hemophilia Legacies are a Good Idea?
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Why Do People Think Hemophilia Legacies are a Good Idea?

Eventually, we reach a place in life where making a meaningful impact in the world becomes a motivating force. We know we’re there when we simply want to make something…

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Editor’s Choice: Pharma Freebies, Gadgets, & Nightmares

Happy Friday Patient Worthians! PW Contributor Nolan is back in our Video Series with his details on dystonia treatment. We also have some cool info on EDS gadgets! What do pharmaceutical companies mean…

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When Pharma Hands Out Hemophilia Freebies, Are They Really Free?
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When Pharma Hands Out Hemophilia Freebies, Are They Really Free?

Pharmaceutical marketing can often be a very big, very sharp double-edged sword. In order to make drugs and stay in business, pharmaceutical companies have to speak to their audience, which…

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Editor’s Choice: Bad Viruses, Simple Terms and an Easier Life

Welcome to this week's Editor's Choice! We hope that those of you who are having a back-to-school week, are smooth sailing! This week, we have some news on IPF and hemophilia…

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The Power of Connecting: It’s Better Than Vacation!

Have a rare disease? Have you ever been to a national patient conference? These are invaluable opportunities to connect with others who share your challenges and concerns! Imagine being in…

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When Nanoparticles Rule the World, Treatments Get Better
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When Nanoparticles Rule the World, Treatments Get Better

What the heck is a nanoparticle? It sounds very Twilight Zone-ish, and in some ways, nanoparticles are just that. The thing is, nanoparticles are the movers and shakers of the biologic…

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