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Knowledge is Power

HFA creates lifelong learning platform for patients and families

By Emily Roush-Bobolz, staff writer

“ Diabetes, heart disease, cancer – they’re all, unfortunately, familiar terms, and
information about those diseases is readily available on the internet and from
I wish I had this when my doctors. But for rare bleeding disorders, it’s a different story.
children were born. I do
believe my son would be For the newly-diagnosed and even patients who have handled the disorder for
years, understanding and retaining what doctors say can be complicated, and
alive today if I had access finding information on the internet can be hard.
to this information when
my twins were diagnosed Parents receiving a child’s diagnosis of a bleeding disorder can be overwhelmed
and wonder whether they’re asking the right questions and learning fast enough
in 1998. This gives voice to to do what’s right for their child. Those diagnosed as adults may have limited
the questions patients and support from a hemophilia treatment center because some HTCs only have
pediatric hematologists. Those who have dealt with bleeding disorders for decades
caregivers may have but may still be progressing along an increasingly complex learning curve.
may be too afraid to ask
or may be getting advice Hemophilia Federation of America recognized the need for quality, thoroughly-
explained information for all of these scenarios and created a one-of-its-kind,
that doesn’t feel right. online educational service, called Learning Central.
This is empowering.”
“I wish I had this when my children were born. I do believe my son would be alive
~Ashley Gregory, today if I had access to this information when my twins were diagnosed in 1998,”
hemophilia mom said Ashley Gregory of California. “This gives voice to the questions patients and
caregivers may have but may be too afraid to ask or may be getting advice that
Start Learning! doesn’t feel right. This is empowering.”

Visit www.HFALearning.org The original concept for the online learning stemmed from an unexpected
encounter at the hemophilia treatment center by HFA’s President and CEO,
Kimberly Haugstad.

While at the HTC, Haugstad met a mom with a young, newly-diagnosed son with
hemophilia B. Through conversation, they discovered they lived within blocks of
each other in Wisconsin, a state with only about 50 diagnosed patients.

“The statistical likelihood of that happening was tiny,” said Haugstad. “I was
absolutely shocked to find out that another little boy with severe hemophilia B lives
on my street!”

4 Dateline Federation | Summer 2018