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Biogen Idec Forms Partnership to Focus on Gene Therapy for Hemophilia

Biogen Idec, Fondazione Telethon, and Ospedale San Raffaele have entered into a worldwide collaboration to jointly develop gene therapies for the treatment of both hemophilia A and B. The agreement will combine San Raffaele – Telethon Institute for Gene Therapy’s (TIGET) extensive expertise in creating new gene therapy strategies and developing them from the bench to bedside […]

Lovee_Moms Blog

Infusing Love: Prepare for the Unexpected

I love reading my horoscope.  A recent one read, “Come to grips today with financial issues that need your attention. Pay bills, go over accounts, and definitely make a budget.” For those of us living with bleeding disorders, that budget should include paying medical bills you hadn’t bargained for. It’s important to be prepared for […]

Dear Addy

Dear Addy: Out-Of-Pocket Maximums

Dear Addy: I see that my out-of-pocket maximums have gone up this year to $6,600 for an individual and $13,200 for my family. How am I supposed to afford this? With one severe bleed, between hospital stay, medication, and follow-up visits, we could reach this limit within a single month. Sincerely, Sonya, Hemophilia A patient […]


CDC Webinar: Reproductive Issues in Women with Bleeding Disorders

On Thursday, January 22, 2015, the CDC hosted a webinar to help women with a bleeding disorder recognize the signs and symptoms of reproductive issues. The webinar was facilitated by Andra H. James, MD. Dr. James is Consulting Professor of Obstetrics and Gynecology at Duke University, where she also has an appointment in the Division of Hematology. Dr. […]


Staying Fit Together

The U.S Department of Health and Human Services shares some tips on how to stay active when the winter weather makes it unsafe to be outdoors. Take a look! HHS HealthBeat (January 29, 2013) Staying fit together When the weather outside is frightful, being active ain’t so delightful. It just takes motivation. Stay active with a […]

Jen_Moms Blog

Infusing Love: Do I Get Used to It?

I’ve seen a recurring question in the bleeding disorders community a lot in the past few weeks:, “Will I ever get used to sticking/poking my kid?” The answer is yes and no. Think about it — there is nothing normal about sticking your child with an IV needle or accessing their port to infuse them […]


Slow Cooker Beef Stew

It can be hard to stay on track with diet and exercise when the temperatures plummet. It is a good idea to have a plan in place for indoor activities like climbing the stairs, chair yoga, or an exercise video. Keeping the refrigerator stocked with lean proteins, and nutrient dense vegetables will help with clean […]

Cazandra_Moms Blog_Inhibitor

Infusing Love: Celebrations & A Heavy Heart

My son Caeleb has struggled with an inhibitor since he was 11 months old.  Despite many doctors’ recommendations, it’s never been as “simple” as waiting to get below a 10 Bethesda Unit measurement to start immune tolerance therapy (ITT).  He developed a rare allergy to Factor VIII and there is no known treatment or protocol […]

Dear Addy

Dear Addy: Specialty Pharmacy vs. PBM

Dear Addy, What is the difference between a Specialty Pharmacy and a Pharmacy Benefits Manager (PBM), and why should I care? Signed, John, young adult with mild hemophilia A ________________________________________________ Dear John, The Academy of Managed Care Pharmacy (AMCP) defines a specialty pharmacy as “…distinct from traditional pharmacies in coordinating many aspects of patient care […]

boy drinikng milk

Taking the First Steps: Nutrition

For most of us the resolution is the same: Lose weight and get in shape.  However the path to accomplishing these goals might look totally different for each of us.  The most important thing is taking the first steps.  Starting with small changes will help you to see progress.  This in turn, will keep you […]

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