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President and CEO of SCDAA Regina Hartfield discusses how the association will use the funds from the leadership award.
The Sickle Cell Disease Association of America (SCDAA) was presented the Abbey S. Meyers Leadership Award by the National Organization for Rare Disorders (NORD). The annual award is given to organizations that warrant recognition for strong leadership in advocacy and education.
"It's been a tremendous honor for us to be recognized by NORD for the work that we've done," Regina Hartfield, President and CEO, SCDAA said in an interview. "I attribute this honor to all of those in the sickle cell disease community, who really deserve the praise--our warriors, our community based organizations, our partners, as with the fraternity, and also for the caregivers, and all of the clinicians that are involved in the care and the staff at the national office."
The funds that were granted to the association will support community programs, education, outreach, and awareness activities that the local community based organizations are involved in, Hartfield explained.
SCDAA developed a clinical trial finder that is continually being improved upon and has expanded. Currently, the association is preparing to launch the clinical trial finder mobile app to provide more access for patients, providers, and caregivers who are interested in enrolling in a trial.
"There are a lot of decision points that go into deciding whether or not someone wants to participate in a clinical trial," Harfield said. "And so, a lot of these conversations in families, having a mobile app will enable them to pull up information right then and there."