By Madeleine Kates
On the rarest day of the year, February 29th, zebra balloons dotted the hallways at the University at Buffalo Jacobs School of Medicine and Biomedical Sciences (UB Jacobs School) to welcome speakers and guests to a conference on rare diseases. The event was part of Rare Disease Day, held globally each year in late February to raise awareness of the impact of rare diseases on patients’ lives.
Zebras have been adopted as the symbol of rare diseases to illustrate the idea that when you hear the sound of hoofbeats you may automatically think of a horse, but it might also be a zebra. Rare diseases, like the hoofbeats of zebras, are often misidentified, making them difficult to treat.
According to the U.S. Food and Drug Administration, a rare disease is one that affects less than 200,000 individuals in the US. About 7,000 identified rare diseases affect more than 30 million people in this country. FDA-approved treatments exist for less than 500 of these conditions.
This year’s UB Jacobs School event had the theme Care for Rare: From Bench to Bedside, and featured speakers from the medical school faculty engaged in cutting-edge rare disease research. Topics included pharmacy, research, genetics, neurology, oncology/hematology, and thoughts from a patient’s perspective. The goal was to raise awareness about how rare diseases impact people’s lives, and how providers and researchers are actively working to make a difference in their treatment, advocacy, and care.
See www.rarediseaseday.org for information and resources.
Madeleine Kates is a University of Pennsylvania graduate student studying Nutrition Science, with undergraduate degrees in Environmental Science, Life Science, and Psychology from Niagara University and certificates in Plant-Based Nutrition from Cornell University and CHEF Coaching from Harvard University.
