While there are 7,000 known rare diseases, only 5 percent of them have treatments, according to the National Organization for Rare Disorders.
Additionally, on average, patients will visit 7.3 physicians over the course of 4.8 years from the moment they first experience symptoms before they receive an accurate diagnosis, according to research published in the Journal of Rare Disorders.
Last spring, Scarlett Eagle, junior in genetics, who lives with a rare disease herself, wanted to do something about it.
She organized an event that would feature Iowa State students who are affected by rare diseases in hopes of raising awareness about rare diseases in general.
“Rare diseases affect one in 10 Americans so [this event] puts a face to them and shows students that these are things that are affecting your peers right here on campus,” Eagle said.
The event, which takes place on national Rare Disease Day, is designed to be question-driven. Students who are affected by 10 different rare conditions will be stationed by their respective posters and are available to answer questions.
Above all, Eagle hopes that the event will increase awareness and interest about rare diseases.
Rare Disease Day will take place at 6 p.m. on Wednesday in the Gallery Room of the Memorial Union. The event is free, and all are encouraged to attend.
Scarlett Eagle is no stranger to pain.
The whole ordeal lasted maybe five minutes.