Page 5 - HFA_Dateline_2018_Q2_Summer

It was the first time the mom had met another hemophilia
family, and she was eager to connect and ask a lot of questions. hfalearning.org (or join as a guest) at any
The families made a connection and spent a great amount of
time after that initial meeting getting to know each other, and
asking and answering questions.
“It is utterly normal with all of the questions we all have when for easy smartphone use for people who may not have internet
newly diagnosed,” said Haugstad. “The overwhelming reality of
life is our new normal.”
It was clear to Haugstad that newly-diagnosed families in
the community needed a way to learn more about bleeding
disorders. The planning for Learning Central began then and it
has grown to include information for established patients and
even professionals.
“We’re making the one thing we do best, welcoming new people
to the community and creating lifelong learning about bleeding
disorders as a culture, even more robust,” said Lori Long, HFA’s include them and help them educate themselves to the degree
Institute Director.
Learn on Your Terms
Learning Central is unlike a simple online data search. The
e-learning platform is more like a two-way street, like
interacting with an instructor. All of the information in
Learning Central is credible and vetted by medical personnel
and other professionals.
Participants can register for free at
time on a computer, tablet or smartphone.
It’s meant to address all learners, including
those in rural areas who may not be able to attend a local
organization’s education events. The scrollable format allows
or a computer. Registering allows learners to save their spot and
go back to where they left off.
Through quizzes and interactive games, participants learn in
a way and at a pace that works for them. They can test their
knowledge and revisit things they might have missed the first
time around until they feel comfortable with the new knowledge
about bleeding disorders.
“We wanted to offer a way for those patients to feel engaged
and have access to educational programming. We wanted to
they want to learn,” said Long.
Participants can choose their own path, exploring topics of
interest. Learning Central currently includes Bleeding
Disorders Basics, where learners can read more about what
blood is made of, causes of bleeding disorders, genetics, quality
of life and the clotting cascade.
“It helps them understand the science of their situation, so
they’ll be less fearful of looking into research or a clinical trial,”
she said.
Instead of data-mining all over the internet for what a clotting
cascade is, learners can watch a two-minute basic animation or
an eight-minute scientific animation – whatever fits their level
of learning, interest and time.
Besides Bleeding Disorders Basics, HFA’s Learning Central
will soon feature Clinical Trials and Patient-Centered Research.
As the online learning platform evolves and grows to fit the
learning needs of the community, HFA will add segments
on treatments and therapies, inhibitors, advocacy, financial
management, mental health and well-being, insurance, fitness
and nutrition, and history.
The first phase of Learning Central is geared toward new
families and as it progresses, the information will be suited
for medical personnel, the bleeding disorders industry and
students doing research projects, while still being educational
to the general bleeding disorders learner.
Learning Central is part of the HFA Institute, HFA’s e-learning
initiative. It is comprised of the Learning Central (for everyone),
HFA’s Member Organization online learning (to educate
member organization leadership and staff, and HFA board
members), and online training for HFA staff. S
Summer 2018 | Dateline Federation 5