Delaware HOSA Hosts Rare Disease Day Event

Since 2015 Delaware HOSA has partnered with Nemours for an annual Rare and Chronic Disease Research Event in conjunction with Rare Disease Day. National Rare Disease Day is always the last day of February each year.  The main objective of Rare Disease Day is to raise awareness among the general public and decision-makers about rare diseases and their impact on patients' lives. The event engages and involves HOSA members in science, research & STEM-related careers through education, mentorship, and hands-on experience, to help guide the future health professionals.  

The event's planning committee identified 20 rare diseases that they treat or do some type of research on at Nemours. Delaware HOSA members (teams of 2) select one of the diseases to research and create a visual display to describe the disease and propose at least one area of research for possible future exploration.  For 2017, twelve schools signed up to participate. The diseases selected are: Klinefelter Syndrome, Skeletal Dysplasia, Marfan Syndrome, Maple Syrup Urine Disease, Klippel Feil Syndrome, Juvenile Rheumatoid Arthritis, Ebstein’s Anomaly, Acute Myeloid Leukemia, Turner Syndrome, Familial Hypercholesterolemia, Denys-Drash Syndrome and Congenital Myotonic Dystrophy.

Nemours has identified a nurse/genetic counselor/clinician, a researcher, and patient/family for each of the above diseases. HOSA members will develop a visual display describing the disease and be judged (by a panel of 4 judges) on their ability to present themselves, communicate the rare disease information to others, as well as propose a possible cure/treatment or quality of life measure. They will also compete for a separate prize in philanthropy efforts for raising funds for rare disease research at Nemours.  The displays will be set up in the Atrium of the Alfred I. duPont Hospital for Children on Tuesday, February 28, 2017 from 9:30 am – 2 pm. Awards will be given to the top 3 teams, in addition to the team that raised the most funds.  Learn more