In an effort to educate the public about specific pediatric and adult rare diseases, the National Organization for Rare Disorders (NORD) has unveiled the new Patient/Caregiver Speakers Bureau.
Volunteer speakers will be given the opportunity to present at a variety of different host settings, such as in classrooms, university and medical school campuses, as well as local community venues.
“Medical students actually learn a great deal about orphan diseases in our coursework already, but that education is too often limited to the corresponding mutations and common clinical presentations tested on licensing exams,” Colton Margus, a third-year medical student, said in a blog published by NORD. “We have far less exposure to the people behind the ailments -- the children and families waiting desperately for a diagnosis and treatment.”
Established in 1983, the not-for-profit organization says that the new Speakers Bureau will highlight the patient-family experience while promoting a stronger social awareness of the challenges of living with a rare disease.
“Our patients and families have very compelling stories, and we think it’s important -- especially for students preparing for health care careers -- to hear those stories,” Mary Dunkle, NORD vice president of educational initiatives, said. “Our goal is to educate current and future medical professionals about rare diseases.”
NORD will work with its approximately 250 member organizations to identify volunteer speakers.
