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Are You Prepared for the Healthcare Insurance Marketplace?

The countdown to the launch of the new online Health Insurance Marketplace is on. Are you ready? If you, like many Americans, have questions about what the Marketplace is and what it does, there are excellent resources available to help answer these questions. Here are some of the most frequently asked questions: “The Marketplace” The […]

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CHOICE: Improving HFA Services for the Community

To all of you who have taken the time to participate in the CHOICE (Community Having Opportunity to Influence Care Equity) Project by taking the survey, thank you. For those who have yet to take the survey, please do (call 800-230-9797 or go to choice.hemophiliafed.org). CHOICE is about the bleeding disorders community and working with […]

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I was a Runner; Now I’m a Warrior

Most of September 24th, 2012 is still a blur in my mind, but what clearly stands out is that it was the day my body stopped moving forward. My name is Courtney, and I have von Willebrand Disease (vWD) Type 1. People with von Willebrand Disease have decreased or malfunctioning von Willebrand factor and cannot […]

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Inhibitors Will Not Inhibit Our Family

I’m sitting and watching my son Blake play catch in the park with a friend. He runs for the ball and trips on a rock and lands in the dirt. I stay seated…and it’s really hard. I remind myself that we are in a different place now, but it’s still very hard. A year ago, […]

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Hepatitis C: Our History and Advances on the Horizon

Recognizing National Hepatitis Awareness Month The month of May is recognized to bring awareness around those living with viral hepatitis. The awareness effort encourages people to get tested for hepatitis and to evaluate treatment options. According to the Centers for Disease Control and Prevention (CDC), an estimated 3.2 million people in the U.S. with chronic […]

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Come On In, the Water is Fine

At Symposium, I wore the same socks for two days in a row, I stayed up four hours past my normal bedtime every night, and I finally realized that I needed to brush my teeth at exactly 7:21 am on Friday… I was like a young child at Symposium: so completely engrossed in everything going […]

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Member Spotlight: Hemophilia Alliance of Maine

Of all seemingly innocuous topics, I was recently surprised to find hiking caught in the middle of a most persnickety online debate. In one thread, athletic enthusiasts hastily poured their auto correct failing hearts out over how “The Hike” should be categorized: a recreation or a sport? While the comments proved a riveting form of […]

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Responding to Challenging Circumstances

By Sadaf Ahmad HFA’s Helping Hands Program is an urgent financial assistance program that provides aid to individuals and families to assist in crisis situations with expenses such as housing, transportation, and utility bills. HFA conducted a survey of Helping Hands (HH) applicants to understand the program’s impact and assess the experiences of the most […]

Don’t Be Afraid To Ask Questions!

As a patient or a parent of a child with a bleeding disorder, you may, at some point in time, have the opportunity to make a decision to participate in a clinical trial for a new factor product, a research project, or the genotyping project. This decision should not be taken lightly. All your questions […]

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Talking to Your Provider About Pain

People living with a bleeding disorders know a thing or two about pain. Many with arthritis report having to wait until their body “loosens up” before they can begin their day. There’s also the pain you may feel after a particularly busy day when you’ve been on your feet, and that joint that always bothers you […]

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Assisting and Advocating for the Bleeding Disorders Community