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Infusing Love: Fear of the Unknown

Today, HFA is pleased to introduce new blogger, Kari.  Kari and her daughter have a rare bleeding disorder, Platelet Storage Pool Deficiency (PSPD). Continue reading as Kari introduces herself and shares more about her and her daughter’s diagnosis. Every morning when I wake up, the first thing that usually pops into my head is my […]

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Bicycle Safety for Kids-Video

Riding a bicycle is  a great way to have fun, exercise and stay healthy.  Whether your child is just learning to ride or has been on a bicycle for years, it is always important to encourage him or her to ride safely.  Teaching children how to stay safe on a bike when they are young can create safety habits they […]

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Boston Globe: Help For Patients with Chronic Diseases

Receiving a diagnosis for a chronic disease whether for yourself or your child can be devastating and confusing. When my son was diagnosed with hemophilia, he was just days old. I often think back to those first days and distinctly remember a conversation with a nurse, who would go on to become a long-term caregiver […]

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Infusing Love: Is There A Manual For That?

We have all heard the clichés about needing a manual for parenting but one doesn’t exist. Parenting is hard, exhausting work. Hemophilia parenting is a whole other dimension; one that vaguely looks so surreal that it cannot possibly be the way we live. I remember the doctors, nurses and other HTC staff members loading us […]

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Dear Addy: Maximum Out-of-Pocket Expenses

Dear Addy, Are there any guarantees that maximum-out-of-pocket expenses won’t continue to rise under the ACA? What, if anything, restricts such a rise? Signed, Not-So-Deep-Pockets __________________________ Dear Pockets, Maximum-out-of-pocket expenses are likely to continue to rise year-after-year. In fact, under the ACA, if the average cost of insurance premiums rises on a per person basis […]

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Boston Globe: Specialty Drugs Transform Lives — But At a Cost

Every year, Cora Higson fills out a sheaf of forms and waits several long, anxious days to learn whether a charity will pay for the drug she needs to breathe. The medication — Tracleer — is so essential, Higson says, that she is supposed to call her doctor immediately if she misses a dose. But […]

Take Action

HR 460 Change.org Petition

For the past 20 years, we have worked hard to make sure everyone with a bleeding disorders has access to affordable life-saving treatment. One of the ways we do this is to support legislation like the Patient’s Access to Treatment Act (HR 460). This bill would prohibit an insurance company from charging more for drugs […]

Industry News

Pfizer: Phase 3 Study Postitive Results of Weekly Prophylaxis

Once-Weekly Prophylaxis Treatment with BeneFIX® Significantly Reduced Annualized Bleeding Rate Compared to On-Demand Treatment _____________________________ Pfizer Inc. announced the positive results of a Phase 3 study comparing a prophylaxis regimen of BeneFIX® Coagulation Factor IX (Recombinant) 100 IU/kg once-weekly to on-demand treatment in people with moderately severe to severe hemophilia B. The top-line results of the […]

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USDA’s Summer Meal Program

The financial strain of dealing with a bleeding disorder can be felt on many levels.  It is not always easy to pay the medical bills and make ends meet.  Summer time can be even harder for some families who are trying to eat healthy but are having a hard time putting food on the table. […]

Medical research

Penn Research Could Improve Hemophilia Treatment

*This article was originally posted on July 17, 2014 in Penn Current and was written by Katherine Unger Baillie. Click here to read this article in its entirety. ____________________________________ Hemophilia is a rare but potentially dangerous disease. People with the condition produce very low levels of clotting factor, the proteins in blood that stop bleeding and help begin the […]

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Assisting and Advocating for the Bleeding Disorders Community