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Mom's Blog_Jen

He’s Just a Normal Kid

Our family had an eventful October. Along with multiple bleeds, (an unexplained forearm bleed and a couple of recurring ankle bleeds) we experienced our first ER visit for stitches. During a typical Friday afternoon. I was at work when I answered the phone to hear the voice of our wonderful school Health Aide — not […]

My Life, Our Future Launches Redesigned Website

It’s been an exciting year for My Life, Our Future, a nationwide initiative spearheaded by the National Hemophilia Foundation (NHF), offering a free genotyping test to people with hemophilia A and B. Now we’re pleased to announce the launch of the program’s newly redesigned website! As more and more hemophilia treatment centers (HTCs) across the […]

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Dear Addy: Pre-Existing Condition Insurance Plan

Dear Addy, I have a young child with substantial medical costs. For the past couple of years I have spent 20-40% of my income on medical bills. Unfortunately my income is “too high” for Medicaid. I live in Texas and I currently have PCIP (pre-existing condition insurance plan) insurance which ends this month. What do […]

New Phase 3 Data Confirms Long-Lasting Characteristics of ALPROLIX™ and ELOCTATE™

CAMBRIDGE, Mass. & Stockholm –Today Biogen Idec (NASDAQ:BIIB) and Swedish Orphan Biovitrum AB (publ) (Sobi) (STO:SOBI) announced new results from Phase 3 studies of their investigational long-lasting recombinant factor IX and VIII Fc fusion protein candidates for hemophilia B and A, ALPROLIXTM and ELOCTATETM, including an interim analysis of pediatric pharmacokinetics (PK) data. These interim […]

Moms Blog_Cazandra Hospital

Monitoring Anxiety

I have struggled with anxiety for as long as I can remember.  It took me years before I realized what it was and that it was real.  My mother also lived with it, but our family did not realize it until after she passed away.  It is a condition that can be handled in many […]

Mom's Blog_World Aids Day

Keeping Their Memory Alive: World AIDS Day

Had I been the Matthew my mother was expecting to give birth to, my life would have been astronomically different. I was born right around the time the first factor concentrates to treat hemophilia were available for home use. Had I been born a male rather than a female, I probably would have been diagnosed […]

Moms Blog_Thanksgiving

Changes in Latitude of My Attitude & Gratitude

I think Thanksgiving gets more hype than it should. It starts at an early age – we encourage preschoolers to make construction paper turkeys from their hands and write what they are thankful for on the “feathers.” Elementary and middle school students express their gratitude in the form of coat or canned food drives at […]

Moms Blog_Sonji Airport

My Bags Are Packed

I’ve been traveling more this past year than ever before.  It’s both a blessing and a curse each time I leave for a trip on my own without the rest of the family.  The anticipation of having some solitude and quiet time is fantastic. On the flip side, I’m a typical control-freak of a hemo […]

High-Cost ‘Specialty Tier’ Prescription Drugs Under Scrutiny in PA

If you have hemophilia, multiple sclerosis or any number of other hard-to-treat diseases, the cost of your medications alone could reach into six figures, depending on your insurance coverage. “It’s roughly $15,000 a month, and from that I’m lucky to have good insurance so we have good co-pay structure, co-insurance,” said Nick Vizzoca, whose 13-year-old […]

A 504 Plan Can Help Protect Your Child

I’m just like any other father when it’s time for my children to go back to school—so excited! All kidding aside, transitioning back to school can be difficult for everyone if you’re not prepared. When it comes to the extra challenges our kids with bleeding disorders face, the added stress can become an even larger […]

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Assisting and Advocating for the Bleeding Disorders Community