There are approximately 7,000 rare diseases and conditions. Each affects fewer than 200,000 Americans. People who are our students, families, neighbors and fellow members of the North Colonie CSD.
Feb. 28, 2023 is Rare Disease Day and NCCSD parent, Nicole Casale is working to raise awareness about the day, and about galactosemia. Her son Joseph, a Fort Ferry fifth grader, has galactosemia.
“In the Capital District there are only a small handful of people living with Galactosemia, I believe only 2 in Albany county,” Mrs. Casale said. “Galactosemia affects roughly 1 in 60,000 people. It’s estimated that there are around 3,000 people in the US with the disorder.”
Mrs. Calase explains that raising awareness about rare diseases is important.
“On this day we wear our Zebra stripes or anything that represents the rare disorder that you support. So why the zebra stripe? Doctors are taught, ‘When you hear hoofbeats, think horses not zebras,’” she said. “Zebras are rarer… so wear your stripes and support those living with a rare disease, odds are you know someone.”
To learn more, visit rarediseaseday.org.