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Infusing Love: Anything is Possible

His name was Adam. And when I met him, I let out a huge sigh of relief. He was rather good-looking, and he seemed smart, strong, capable and perhaps most importantly, healthy. (Before you jump to any conclusions, this wasn’t a blind date.) My friend Carrie had introduced me to Adam. They shared a ski […]

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CSL Behring Submits FDA Approval for Long Acting Hemophilia B Product

CSL Behring announced on Tuesday, December 16, 2014 that it has submitted a biologics license application (BLA) to the United States Food and Drug Administration (FDA) for the marketing authorization of its long-acting fusion protein linking recombinant coagulation factor IX with recombinant albumin (rIX-FP). Once approved by the FDA, rIX-FP (Coagulation Factor IX {Recombinant}, Albumin […]

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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 […]

Northern CA DIA

Dads in Action Spotlight: Hemophilia Foundation of Northern California

[glossary_exclude] The recent addition of Dads in Action (DIA) to the Hemophilia Foundation of Northern California (HFNC) has been instrumental in encouraging our dads to connect, participate and learn from each other. While we worried how successful we would be (Would dads who didn’t know each other open up, share, or even show?!), we were […]

Moms Blog_Samantha

Infusing Love: We Are Stronger Together

In March 2014 I attended my first HFA conference, and for the first time in my new journey as a hemophilia mother I didn’t feel alone and left truly inspired.  Beyond encouragement, I also received education which helped me to accept my own diagnosis of hemophilia. For example, I met Julie, who told me about […]

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My Journey: Determined to Heal

For women carrying the hemophilia gene, getting a proper diagnosis is not easy. By definition, if a woman has clotting factor levels less than 50%, she has mild hemophilia. Many women report that medical professionals are still under the assumption that a bleeding disorder can only affect males. It is these challenges that can make […]

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Healthful Holiday Recipes

When doing your holiday meal planning, don’t forget to keep it healthy by adding lots of fresh fruits and vegetables.  Remember the goal is to make at least half of your plate fruits and vegetables.  Preparing your own food (as opposed to prepackaged, or processed foods) and being able to control what is in them will help keep your meals healthier.  […]

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Pfizer Establishes Gene Therapy Partnership

Pfizer Inc. announced on Monday, December 8, 2014  two strategic decisions to expand the company’s rare disease research and development activities through the establishment of a gene therapy platform to investigate potential treatments for patients. First is an agreement with Spark Therapeutics to develop SPK-FIX, a program incorporating a bio-engineered AAV vector for the potential […]

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Baxter Seeks OK to Sell New Hemophilia Drug

Baxter International submitted an application to the Food and Drug Administration for the approval of a key hemophilia drug. The drug, BAX 855, is an extended-release version of its flagship hemophilia drug Advate, which is sold in dozens of countries. The treatment is seen as a key part of the company’s drug pipeline and its […]

medical_news

Update #3: NHF’s MASAC Assessment on Inhibitor Studies

On September 24, 2014, the medical journal, Blood, came out with a study called, Recombinant Factor VIII Products and Inhibitor Development in Previously Untreated Boys with Severe Hemophilia A.  This study suggests that inhibitor incidence is higher in previously untreated patients (PUPs) with severe hemophilia A that are using Kogenate/Helixate.  The World Hemophilia Federation (WHF) issued a statement on October 6, and another […]

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Assisting and Advocating for the Bleeding Disorders Community