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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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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 […]

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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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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 […]

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Infusing Love: Invincibility Syndrome

In May of this year Max, gave me factor for the first time. I was getting ready for HFA’s first regional Gears for Good  bike ride in New Hampshire. In preparation, I was out riding my bike ten or more miles every chance I got. Max would often drop me in one spot and then […]

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Safety Matters-Hiking

It is important for individuals with bleeding disorders to participate in some form of physical activity.  Being physically active helps to strengthen one’s muscles, bones and joints.  One of the many benefits of having a strong healthy body can be a reduction in the number of bleeding episodes an individual might experience. Of equal importance […]

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Infusing Love: On The Edge

Two boys who live on opposite sides of the International Date Line met this past May and it was magical. The two boys, ages 10 and 14, both share a love of Legos, tormenting their siblings, and guzzling root beer. Both boys also have severe Hemophilia A, as well as a long history of high […]

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Assisting and Advocating for the Bleeding Disorders Community