The planning committee identified 12 rare diseases that we treat, and/or do some type of research on at Nemours. The Delaware high schools involved in HOSA – Future Health Professionals Program, each team (of 2 students) selected one of the diseases to research and create a poster to describe the disease and propose at least one area of research for possible future exploration. For 2019, twelve schools signed up to participate.
The diseases selected are: Achalasia, Retinitis pigmentosa, Necrotizing enterocolitis, Osteogenesis Imperfecta, Pelizaeus-Merzbacher disease, Sickle cell disease, Floating-Harbor syndrome, Kleefstra syndrome, Juvenile Onset Recurrent Respiratory Papillomatosis, Neurofibromatosis 1, Gaucher disease, and Jansen type metaphyseal chondrodysplasia.
We have selected a Nemours researcher or clinician, as well as a 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 four judges) on their ability to present themselves and their poster, 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 posters will be set up along the window walkway just off of the Atrium of the Alfred I. duPont Hospital for Children on Thursday, February 28th, 2019 from 9:00 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 the students as well as our research on rare diseases.
Additional Information:
*HOSA- Future Health Professionals 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.