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Wendy_Infusing Love

Infusing Love: Gateway to Understanding

  For someone who spends her days organizing events for a living, it always surprises me how much I look forward to the HFA Symposium each year. It has a similar structure to many of the events I plan – with plenary sessions, workshops, exhibits, and networking events – yet it feels completely different. Yes, […]

Fit Factor_Spring Training

Spring Training: Time To Get Off The Couch

Spring is the time for new opportunities. Days are getting longer, trees are budding, and those cool breezes are finally turning warm. Spring is an opportunity to revitalize ourselves and get back into action after winter’s long hibernation. With more opportunities for exercise and outdoor activity, spring is a great time to get off the […]

Bren and Boys[2]

Infusing Love: Thanks ABC!

Wow – what a difference a day makes!  Yesterday our community was outraged by a careless remark made on the ABC television drama, “Secrets and Lies” which aired on Sunday, March 15th.  I, along with thousands of others, voiced my concern in a variety of ways – social media, emails, and good old fashioned talking. […]

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ABC’s Secrets and Lies Dishonors Hemophilia Patients

ABC’s Secrets and Lies Dishonors Thousands of Americans Living with Hemophilia Calls manageable hereditary condition “nasty byproduct of incest.” WASHINGTON, DC — The Hemophilia Federation of America (HFA) was appalled to learn that the American Broadcasting Company (ABC) show Secrets and Lies referred to hemophilia as a “nasty byproduct of incest” in the episode “The Sister” (S01, E04) that […]

medical_news

New Gene Therapy For Hemophilia Shows Potential As Safe Treatment

Research showed that bleeding events were drastically decreased in animals with Hemophilia B. Using a viral vector to swap out faulty genes proved safe and could be used for the more common Hemophilia A. _______________________________ A multi-year, ongoing study suggests that a new kind of gene therapy for Hemophilia B could be safe and effective […]

Moms Blog_Emily

Infusing Love: Tough Questions to Answer

I was starting to get Ryan, my youngest, ready for bed while Logan hovered around us. Logan loves Ryan, and wants to be near him always. It is incredibly sweet. But on this particular day Logan was paying close attention to Ryan, and after a few moments Logan casually asked, “When does Baby Ryan get […]

Industry News

FDA Accepts Bayer’s Application for New Hemophilia Treatment

Bayer HealthCare announced that the U.S. Food and Drug Administration (FDA) has accepted the company’s Biologics License Application (BLA) for BAY 81-8973, a recombinant Factor VIII compound. Bayer is seeking FDA approval of the investigational compound, proposed trade name Kovaltry™, for the treatment of hemophilia A in children and adults. “Bayer is committed to continually […]

Community_MomsBlog_HAM

Infusing Love: A True Black & Blue Sensation

While the rest of the world is debating whether a dress is black and blue or gold and white, one thing I know for certain is that my son, Thomas, has been black and blue many times over the last eleven years. Do you think the world understands why? You might remember HFA’s Hemophilia Awareness […]

rare_disease_kids

HFA Observes February 28th As Rare Disease Day

The Hemophilia Federation of America (HFA) joins the National Organization for Rare Disorders (NORD) on February 28th, and others around the world in observing Rare Disease Day. The purpose of this day is to focus attention on the needs of patients and families affected by rare diseases. In the U.S., any disease affecting fewer than […]

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Escaping Winter Weather? Take Your Workout with You!

Ready to ditch the ice and snow for warmer temperatures, a sandy beach and some sun?   While it is easy to sit back and relax on vacation, it is also very important to keep up your fitness routine.  Schedules relax while traveling and we tend to over indulge in things that may cause us to […]

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Assisting and Advocating for the Bleeding Disorders Community