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Moms Blog_Destinee

Infusing Love: A Life Never Imagined

Have you ever signed up for something you felt you were not quite qualified for, but went ahead and did it anyway? I have, and I’m preparing to do it again.” Several years ago, when I first heard about Washington Days, I never imagined myself actively engaging with legislators.  For most of my life, I […]

Dear Addy Banner

Dear Addy: Holiday Travel

  Dear Addy, “My family and I are traveling out of state for the holidays. It is our first time traveling away from our hemophilia treatment center. Because of my son’s bleeding disorder we are concerned about insurance covering any emergency medical care he may need at an out of state hospital. How can I […]

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A Caregiver’s 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 […]

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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 […]

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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 Caregiver’s 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. […]

National Caregiver Month

November is National Caregiver Month

The bleeding disorders community is made up of dedicated caregivers. Moms, dads, grandparents, partners, spouses, and friends play a crucial supportive role in their loved one’s well-being. However, caregivers can often feel stressed, overwhelmed and burnt out. Therefore, it is important for caregivers to remember to take time just for them. Caregivers often feel guilty […]

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FDA Hosts Patient-Focused Meeting

  On Monday, September 22, several members of the bleeding disorders community came out to share their experiences with bleeding disorders treatment with the FDA.* HFA worked with partners like NORD, PPTA, and NHF to ensure that our community was effectively represented. Patients and advocates of every age, every background, and with several different conditions came out […]

Blood Sisterhood_Sarah_Ashley

Sisters By Chance, Friends By Choice

A carrier of the hemophilia gene is a female who has a genetic mutation on one of her X chromosomes. About 1/3 of carriers experience bleeding problems and are often referred to as symptomatic carriers. By definition, if a woman has clotting factor levels less than 50%, she has mild hemophilia. Ashley and Sarah are […]

Project RED

Project RED: Reaching Everyone Directly

A word that we hear frequently right now is “access”—access to quality care, resources, education, community, and other people affected by a bleeding disorder. Our Blood Brothers and Sisters everywhere have these concerns. The recent rise in the number of bleeding disorder organizations around the country (4 new chapters and member organizations) in the last […]

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Assisting and Advocating for the Bleeding Disorders Community