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Update #1: Study Suggests Higher Inhibitor Incidence in PUPS Using Kogenate/Helixate

October 6, 2014

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.聽 This study suggests聽that inhibitor incidence is higher in previously untreated patients (PUPs) with severe Hemophilia A that are using Kogenate/Helixate (Bayer/Nexgen). Click here to read the […]

An Inhibitor Mom Shares Her Story With the FDA

September 25, 2014

On Monday, September 22, several members of the bleeding disorders community came out to share their experiences with bleeding disorders treatment with the FDA. HFA worked with partners like NORD, PPTA, and NHF to ensure that our community was effectively represented.聽Patients and advocates of every age, every background, and with several different conditions came out […]

Leveling with the FDA About Hemophilia Inhibitors

September 23, 2014

On Monday, September 22, several members of the bleeding disorders community came out to聽share their experiences with bleeding disorders treatment with the FDA. HFA worked with partners like NORD, PPTA, and NHF to ensure that our community was effectively represented.聽Patients and advocates of every age, every background, and with several different conditions came out to […]

Infusing Love: Is There A Manual For That?

July 23, 2014

We have all heard the clich茅s about needing a manual for parenting but one doesn鈥檛 exist. Parenting is hard, exhausting work. Hemophilia parenting is a whole other dimension; one that vaguely looks so surreal that it cannot possibly be the way we live. I remember the doctors, nurses and other HTC staff members loading us […]

Infusing Love: On The Edge

July 9, 2014

Two boys who live on opposite sides of the International Date Line met this past May and it was magical. The two boys, ages 10 and 14, both share a love of Legos, tormenting their siblings, and guzzling root beer. Both boys also have severe Hemophilia A, as well as a long history of high […]

Infusing Love: A Father’s Perspective

June 15, 2014

Today HFA is proud to present a special “Infusing Love” blog — an excerpt from our new book, “Dads in Action: Real Stories from the Bleeding Disorders Community.” 聽To order your FREE copy of the book, click HERE. Parenthood began for me as it has for many others; I was a first-time father, venturing through […]

Inhibitor Family Camp: Our Own Kind of Oz

December 20, 2013

What is Inhibitor Family Camp? Hemophilia Inhibitor Family Camp was founded in 2010 by聽Comprehensive Health Education Services (CHES), and is made possible through an educational grant provided by Novo Nordisk. There are currently two programs held annually, both take place at camps that are part of the Serious Fun Network (formerly known as The Hole […]

Monitoring Anxiety

December 4, 2013

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

Chocolate and Vanilla: Two Brothers鈥o Different

August 7, 2013

By Cazandra Campos-MacDonald One thing I鈥檝e learned is that right when I think I’ve got hemophilia all figured out, something comes along that blows my perception and understanding right out of the water.聽 I鈥檝e learned that you never know when your experience will ring true with someone else and make them feel less alone.聽 That […]

A World Away; But That鈥檚 Not So Far

April 17, 2013

My fellow hemo moms are like my sisters. They are the women I can call, text, or email when I need an outlet for my fears and frustrations.聽 There seems to be an instant sisterhood amongst hemo moms as soon as you connect a group of them – whether that connection takes place in person […]

The Importance of Comprehensive Care

June 3, 2011

Watch this video to understand why comprehensive care is vital for people in the hemophilia community to live a long, healthy life. You will hear from individuals who have directly been impacted by comprehensive care and an individual who works in one of the centers and has seen first hand the success of comprehensive care.


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