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Dear Addy: Project CALLS

Dear Addy, My insurance company is making it increasingly difficult to access the services and products I need to care for my bleeding disorder, which has led to delayed care. How can I report these issues? Signed, Frustrated __________________________________________________________________________________________________________________ Dear Frustrated, You are not alone in your concerns. In August 2015, HFA launched Project CALLS […]

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Dear Addy: Carrier Testing

Dear Addy, Given our family history, my 8-year-old daughter could be a carrier of hemophilia. When should she get tested? Signed, Curious Carrier ____________________________________________________________________________________ Dear Curious Carrier, When to get tested is a personal decision, and you have a lot to consider. Importantly, consider that determining if your daughter is a carrier now could enhance […]

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Dear Addy: Advocacy Presentation

Dear Addy, I have to do a presentation in front of my eighth grade class on a cause I care about. I’d like to focus on bleeding disorders because I have von Willebrand Disease (vWD), but there’s so much information and I don’t know where to start. Help! Signed, Anxious for an A   Dear […]

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Dear Addy: Mental Health

Dear Addy, I’m concerned about how my bleeding disorder is effecting my mental health. However, it’s not clear that my insurance covers a therapist or counselor so I keep putting off seeking counseling or therapy. How important is mental health and where do I find the correct insurance information? Sincerely, Taking Control _________________________________________________________________________ Dear Control, […]

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Update #3: Zika Virus & Blood Supply

On August 26th, the US Food and Drug Administration issued a revised guidance to US blood banks addressing Recommendations for Reducing the Risk of Zika Virus Transmission by Blood and Blood Components. The Zika virus is transmitted primarily by the Aedes mosquito; it can also be spread by sexual contact. Although 4 out of 5 […]

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Dear Addy: Back to School Secondary Education

  Dear Addy, My son is starting kindergarten this fall and I’m concerned about what will happen if he has a bleed at school. What are his rights at school and how do I ensure he has the same opportunities as other students? Sincerely, Proactive Parent ______________________________________________________________________________________________________________________________________________________________________________________________________________ Dear Proactive, With the new school year approaching, […]

Intern Introspective: That’s a Wrap for Cami

Intern Introspective Earlier this summer we welcomed our summer policy & government relations interns to our DC office. Eric and Cami are part of the bleeding disorders community and were chosen to participate in a 10-week internship because of their leadership qualities and interest in the field of policy and advocacy. Throughout the summer, Eric […]

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Voluntary Recalls Issued for Additional Lots of Kogenate FS Recombinant Clotting Factor Product

Bayer has announced a voluntary recall of additional lots of Kogenate FS with vial adapter. This is an update to the recall that was issued on July 25, 2016. All lot numbers affected by the July 25, 2016 recall and August 10, 2016 extension are: Product Lot Number Expiration Date Kogenate FS 250 IU Vial Adapter 270RV8X 12/19/2017 […]

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Voluntary Recalls Issued for Additional Lots of Helixate FS Recombinant Clotting Factor Product

CSL Behring has announced a voluntary recall of additional lots of Helixate FS with vial adapter. This is an update to the recall that was issued on July 25, 2016. All lot numbers affected by the July 25, 2016 recall and August 10, 2016 extension are: Product Lot Number Expiration Date Helixate FS 250 IU 270P892 09/15/2016 […]

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Update #2: Zika Virus & Blood Supply

For the past few months, HFA has been monitoring the progression of the Zika virus in the United States. Since the first reported cases of Zika virus reaching the United States in January, there have been thousands of additional cases. According to the Centers for Disease Control (CDC), the follow cases and causes of transmission […]

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