Several major academic and medical centers are planning special events for Rare Disease Day 2015. This awareness day is always observed on the last day of February and is hosted in the U.S. by NORD (www.RareDiseaseDay.US) and internationally by EURORDIS (www.RareDiseaseDay.org).
Rare Disease Day was first observed in 2008 and has grown every year since then. More than 80 nations participated last year. The purpose of the day is to focus attention on rare diseases as a public health issue and to promote awareness of the challenges of living with a rare disease.
The Department of Genetics at the University of Alabama at Birmingham will be hosting its second annual Rare Disease Day event this year with a symposium for medical professionals and a simultaneous one for the community.
"We see this as an outstanding opportunity to educate both our staff and the community of patients and parents regarding new developments in the diagnosis and management of rare disorders," said Bruce R. Korf, MD, PhD, professor and chair, Department of Genetics. "This year, we will focus on new approaches to therapy based on better understanding of disease mechanisms. Like last year, we will include both speakers from UAB and nationally recognized invited speakers."
Information about the 2014 UAB Rare Disease Day event is posted online here: http://www.uab.edu/news/faculty/item/4220-uab-hosts-world-rare-disease-day-symposium
Other academic centers planning special programs for Rare Disease Day 2015 include the Boler-Parseghian Center for Rare and Neglected Diseases at the University of Notre Dame and the Sanford-Burnham Medical Research Institute.
In addition to the events at hospitals and universities, the National Institutes of Health (NIH) will host a Rare Disease Day event for researchers and patient organizations. Also, NORD and its members are organizing "State House Events" in more than 30 states to enhance awareness among legislators of issues such as lack of access to treatments for patients.