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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 […]

Mom' Blog_Emily_Logan

As I See Him

By: Emily Boyer It has been a long day; an immeasurably long day. We spent it at the Hemophilia Treatment Center (HTC) in an attempt to rid my little one’s body of a persistent inhibitor. It was long. I am tired. My house is a mess – I do not remember the last time my […]

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Dear Addy: Marketplace

Dear Addy, I work for a small business. Health insurance through my company for my family costs $1,000 a month. At the end of the year the monthly premium will jump to $1,300 a month and we can’t afford to pay that much. On top of this, for emergency care and hospitalizations we have to […]

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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Running/Walking – Safety (video)

Running and walking are often deemed safe activities for individuals with hemophilia. They are both great forms of exercise and just about anyone can do them, all you really need to get started is a good pair of sneakers. However, running and walking are not without risk. In this second video of our running/walking series, we […]

Mom's Blog_Juanita & Jon

Up, Up, and Away!!!

By Juanita Fish When my son was 9 years old, I begrudgingly sent him to camp for the first time. It was a pivotal moment for my family! When Johnathan (Jon) was born, I became the mother of a child that would need to be raised differently than others, at least physically. Eight months later, […]

FitFactor Run Video

Running/Walking – Getting Started (video)

Running and walking are often deemed safe activities for individuals with hemophilia.  They are frequently recommended because they don’t have take a lot of time or cost a lot of money, but can make a big difference in how you feel and in your overall health.  Remember, healthy bodies bleed less! In this first video of our running/walking series, we introduce […]

Moms Blog_Maryann

Self Reliance To the “Max”

By:  Maryann May I’ve been thinking a lot about Max and how he gained his hemophilia independence.  He was 6 the first time he self-infused.  He did it at our chapter’s family camp with the guidance of some amazing older mentors.  In those days things weren’t nearly as organized as they are now; no gaggle […]

megan king family photo

The Red, White & Blue Of Hemophilia Independence

As we celebrate America’s Independence Day, nothing says it more than the wearing of red, white and blue, a parade and a night of fireworks. Self- infusion is Independence Day for kids with bleeding disorders.  They wear their medical alert bracelets, they go to camps, they practice – and sometimes struggle – with veins that […]

Emily

Adding More Mommy Friends to the Playgroup

When my oldest was first born, I was part of a weekly playgroup; a group of five to seven moms that would sit around a plate of cut-up vegetables and lemonade.  Through a fog of sleep deprivation, we exchanged stories of introducing our babies to solid food and comparing which brand of diapers worked best.  […]

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