First place winners Layalie Alfroukh and Hemza Alfroukh of Middletown High School researched and presented
Morquio Syndrome during the 6th Annual Rare Disease Day at Nemours Alfred I. duPont Hospital for Children
Nemours celebrated Rare Disease Day on February 28th, 2020. The Nemours Alfred I. duPont Hospital for Children and Delaware HOSA-Future Health Professionals, co-sponsor this competitive event to encourage student engagement, confidence building and teamwork, and to support policies and practices that facilitate research, encourage innovation, and advance awareness and understanding of rare diseases. Student teams from Delaware schools each prepared a poster that described their research efforts, and a proposed cure/treatment or way to improve the quality of life related to the rare pediatric disorder. Students also participated in fundraising efforts designated for rare disease research at Nemours collectively raising $10,010. Delcastle High School received the Philanthropy Award raising $1,935!
The main objective of Rare Disease Day is to raise awareness to the general public and decision-makers about rare diseases and their impact on patients’ lives. It also target authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases. The Zebra is the official symbol of rare diseases in the United States and is noted for its black and white stripes. Everyone has his/her own stripes, those characteristics that make each individual unique.
Rare Disease Day focuses on bridging the gaps in the coordination between medical, social and support services in order to tackle the challenges that people living with a rare disease and their families around the world face every day. Rare disease research is not only done for the sake of creating knowledge, but to translate the knowledge generated into real benefits for patients – Bench to bedside, clinic to community.
Please join us and support our patients and families living with rare diseases, as well as the efforts of Nemours Biomedical Research, and the next generation of healthcare professionals in finding cures or treatments for these disorders.