CRND Celebrates Rare Disease Day 2015
By: Jayme Russell
The Boler-Parseghian Center for Rare and Neglected Diseases recently held a two-day Rare Disease Symposium (February 13-14) and invited researchers, patients, families, physicians, and advocacy groups to speak about their personal experiences with rare diseases. The symposium anticipated Rare Disease Day, recognized worldwide on the last day of February.
Organized by Barbara Calhoun, nurse practitioner and outreach coordinator for the Boler-Parseghian Center, the event featured research presentations as well as discussion panels focused on patient experiences. Because there are roughly 7,000 rare diseases, diagnosis usually takes about 5-7 years and treatments are uncommon or even nonexistent. These diseases are emotionally hard to cope with, so it is important for patients and families to find others who struggle with the same illnesses for support.