Nemours/Alfred I. duPont Hospital for Children observes Rare Disease Day, Feb. 28, by promoting awareness, advocacy and learning about rare diseases.
Nemours has been a resource for families of children seeking diagnoses, treatment, education and community for many rare conditions.
The hospital hosted the “Beyond the Diagnosis” traveling art exhibit featuring original portraits of children and teens with rare diseases. A portrait of patient Julie Gilligan, painted by Nemours research scientist Tariq Rahman, was added to the exhibit this year. Julie, 17, of Media, Pennsylvania, has achalasia, an esophageal disorder, and is being treated by Nemours gastroenterologist Stephen Shaffer. During a reception, Julie described her journey with achalasia and her portrait was unveiled. Then she and a contingent of students from her high school choir performed a few selections. Julie’s portrait is the second portrait Rahman has contributed to the exhibit, which now includes more than 100 works of art.
For the fifth year running, Nemours also hosted a Rare Disease Day Student Research Event in coordination with Delaware HOSA — Future Health Professionals, in which 11 Delaware high school teams competed. The students were well-prepared, having researched their topics, conducted interviews with clinicians, scientists and family members and made visual and oral presentations. In addition, the students fund-raised to benefit rare disease research at Nemours. The team with the highest fund-raising total was Hodgson Vo-Tech High School, followed by Delcastle Technical High School.
The presentation winners were Newark Charter School, first place, for their presentation on sickle cell disease; Conrad School of Sciences, second place, for their presentation on osteogenesis imperfecta; and Middletown High School, third place, for their presentation on retinitis pigmentosa.
After the awards, Delaware Director of Public Health Karyl Rattay and Bryan Gordon, representing Gov. John Carney, proclaimed Feb. 28, 2019, as Rare Disease Day in Delaware and presented the proclamation to Research Operational Vice President Vicky Funanage and Program Chair Terry Pedicone.