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Beginning in 2015, in coordination with Research, Social Services and the Delaware Department of Education (State Advisor, Student Advisors and student teams) HOSA* program, we held our first Rare and Chronic Disease Research Event at Nemours. It was a huge success, and therefore we have decided to make it an annual event. We will celebrate our event on the National Rare Disease Day which 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. Engaging and involving the students in science, research & STEM-related careers through education, mentorship, and hands-on experience, we will help guide our future healthcare workforce. We feel the platform that we have put together for this event does just that.
The planning committee identified 20 rare diseases that we treat and do some type of research on at Nemours. The Delaware high schools involved in HOSA – Future Health Professionals Program, each (team of 2) selected 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. There are two students on each team.
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.
We have selected a nurse/genetic counselor/clinician, a researcher, and patient/family for each of the above diseases. The students will develop a visual display describing the disease. They will 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 28th, 2017 from 9:30 am – 2:00 pm. Awards will be given to the top 3 teams, in addition to the team that raised the most funds. We hope you are available to join us and support your team of students, although it is not mandatory for you to be present.
*HOSA is a national student organization that provides a unique program of leadership development, motivation, and recognition exclusively for students enrolled in health science education. HOSA is 100% health care! The mission of HOSA is to enhance the delivery of compassionate, quality health care by providing opportunities for knowledge, skills and leadership development of all health science students, therefore, helping students to meet the needs of the health care community.