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because of it?” He wanted to know “the real stuff, like does it have When asked what people who are interested in participating in
side effects?” He’s always been skeptical about jumping from a clinical trial should know before they dive in, he was quick to
product to product and the decision to participate in a clinical trial answer, “be prepared for a lot of phone calls.” The contracts,
wasn’t one he took lightly. The thought of taking part in the design paperwork and confidentially disclaimers continue to make their
of a clinical trial and participating in it did however make the way in front of patients and the company’s advocacy contact
concept of cure seem all that much closer. becomes a bit of a household name.

Wiseman was quick to point out the different interpretations of Wiseman’s involvement in the design of the clinical trial is an
term “cure.” For him, treating every seven to 10 days feels like a example of patient-centered research at its finest: involving the
cure. The thought of treating just once every few months, would people affected by research and research results in the process
be even more life-changing. If you asked the parents of a child
their thoughts on those scenarios, their answers may differ. In from the beginning. S
Wiseman’s words, “it’s relative by population.”

HFA’s Research is Another Way to be Involved

HFA has just wrapped up its research project,
“Gene Therapy and You,” and I want to extend
a Big Shout Out to those who participated!

I am so excited about the impact HFA research
has on our community; it will shape our
programming, advocacy and all we do!

I am also pleased to introduce HFA’s
new Research Director, Meg Bradbury.

Kimberly Haugstad, MBA, HFA President & CEO

While I am new to the HFA staff, I am not Fall 2018 | Dateline Federation 9
new the bleeding disorders community—
I have been a Symposium speaker for several
years and am very excited to be steering
the HFA Research Team and applying what
I have learned from other rare disorders.

If you have not yet participated in our
patient-centered research, it’s not too late!
HFA has more projects to come. Stay tuned!

We are looking forward to sharing
the results of our surveys!

Meg Bradbury MS, CGC, MSHS, HFA Research Director