Page 14 - HFA Dateline 2021 Q2 Summer

HFA HOSTS DATELINE LIVE

Annual Product Guide

Brought to Life

BY KYLE MCKENDALL, HFA STAFF WRITER

It was just before 4 p.m. when More than 200 community members Eric Iglewski, LMSW, moderated a
Hemophilia Federation of America registered for the event, which took session titled “Get Counted: The
(HFA) President and CEO Sharon place June 23–25, 2021. Importance of Registries,” in which
Meyers, EdD, CFRE, turned on
her webcam and tested her While the event was a
microphone in the organization’s new concept that the
office in Washington, DC. More than HFA team thought of
1,500 miles away in her home state in early 2021, there was
of Colorado, HFA Vice President unanimous consent
of Policy and Advocacy Sonji among staff on the
Wilkes did the same. The two were decision to act quickly
comparing notes in the presenter to host it. “As patients,
studio of Zoom Webinar and were we have the right to
excited to kick off Dateline Live: know our options. But
Navigating Approved Products and it is our responsibility
Emerging Therapies. With the push to educate and
of a button, HFA begin what would empower ourselves
be 11 hours of webinars focused on about our disorder,”
educating patients about treatment Wilkes said. “From our
options for people with a bleeding community’s history
disorder. we know that patients
and their families
Each year HFA compiles a look to advocacy
comprehensive list of therapies organizations such as
approved by the U.S. Food and HFA to provide the
Drug Administration as well as all facts and information
investigational therapeutic products needed. HFA remains
undergoing clinical trial and committed to being a trusted a panel of community leaders
publishes that list in a special issue source of information for you. We discussed how registries are a critical
of its quarterly magazine, Dateline are steadfast in our commitment way for researchers to monitor
Federation. Dateline Live took the to ensure a safe blood supply and safety signals and other trends, learn
success and value of the print issue transparency around treatment from the patient experience and
and brought it to life over three days options and their efficacy.” predict future needs or concerns.
of online education programming.

14 D A TELINE FEDERA TION < w w w .hemophiliaf ed. or g
DATELINE FEDERATION < www.hemophiliafed.org
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