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A Caregivers Perspective: The Partner

I knew I was on to something good when I arrived home from meeting Brent for the first time. We had a fun night out after a spontaneous meeting through a mutual friend. When I got home, I broke the unwritten rule of waiting a while to text someone new. I was thrilled when he […]

Medical research

Promising Gene Therapy Results in Treating Hemophilia B

On November 19, St. Jude Children’s Research Hospital announced the results of their ongoing gene therapy partnership with University College London and the Royal Free Hospital. The report indicates success in the trial, which used a modified adeno associated virus (AAV) 8 to deliver genetic material for making Factor IX in Hemophilia B patients. In […]

FF Karate Pic 5 Anthony P

VIDEO: Putting A Face to Martial Arts

When considering a physical activity for themselves or their family members with a bleeding disorder, many people overlook the possibility of martial arts.  It is a sport that can be considered for its many benefits beyond building muscle tone, flexibility and general health.  Some of the biggest benefits that come from practicing any of the […]

medical_news

FDA will Review Study Suggesting Higher Inhibitor Incidence in PUPS Using Kogenate/Helixate

On September 24, 2014, the medical journal, Blood, came out with a study called, Recombinant Factor VIII Products and Inhibitor Development in Previously Untreated Boys with Severe Hemophilia A.  This study suggests that inhibitor incidence is higher in previously untreated patients (PUPs) with severe hemophilia A that are using Kogenate/Helixate. The Food and Drug Administration (FDA) and European Medicines Agency (EMA) have […]

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Infusing Love: From One Mom to Another

My non-hemophilia mom friends have often say to me, “I just don’t know how you do it. I just can’t imagine raising a child with hemophilia.” I normally reply with, “my son with hemophilia is my baby, and I’ll do anything for him.” Earlier this summer, this very conversation played out between myself and HFA […]

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Deciding to Chase the Dream

It is important for individuals with a bleeding disorder to find a form of physical activity that they enjoy.  When muscles are used during exercise it helps to  keep them flexible and strong.  Physical activity also helps individuals to maintain a healthy weight which keeps less stress off the joints, and has even proven to […]

Noah and Evann

A Caregivers Perspective: The Unaffected Sibling

My brother Evan was born on July 3rd, 2007. Two days after he was born, he was diagnosed with severe hemophilia A. I was eight years old when he was born and had never heard of this condition. It was difficult for me to grasp that my little brother would not live a ‘normal’ life. […]

Supreme Court

Consumer Guide To The Supreme Court’s Action On ACA Subsidy Issue

The Supreme Court on Friday, November 7, 2014 agreed to hear a case on a subject that’s important to millions of people who receive subsidies to help purchase coverage under the health-care law. Friday’s decision follows earlier action in July when two U.S. appeals courts issued conflicting rulings on the issue. Kaiser Health News, Mary […]

Blood Sisterhood_Rachel

The Silent “Carriers” of Hemophilia

Women have been the silent “carriers” of hemophilia and lived with other undiagnosed bleeding disorders for too long. HFA is committed to providing women with the information and support they need to reach a diagnosis and continue that support through the stages of their life with a bleeding disorder. HFA’s Blood Sisterhood program was established […]

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Infusing Love: Finding Time for Me

Often times I am talking with other moms and the conversation comes up about how tired we are or how we find it difficult to make time for ourselves. As caregivers, we are constantly doing for others. We are making meals, help with homework, running errands, or being a taxi for our kids. Being a […]

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