Rare Disease Day at the IA Capitol

2 March 2023
1007 E. Grand Ave, Des Moines, United States

Description


In honor of those who have lost their battle with rare diseases like cystinosis and in honor of Rare Disease Day, Next Generation of Cystinosis (NGC) will host an event on March 2 at 1 pm (CST) at the Iowa State Capitol Building, 1007 E. Grand Ave, Des Moines, IA 50319. At this event, you will hear from people living with rare diseases and elected officials. We will meet with our elected officials and share our stories/our needs.

Rare Disease Day is marked globally every year on the last day of February—the rarest date on the calendar—to underscore the nature of rare diseases and the challenges patients face. Rare Disease Day is sponsored in the United States by the National Organization for Rare Disorders (NORD), the leading independent, nonprofit organization committed to the identification, treatment, and cure of rare diseases. Next Generation of Cystinosis is a 501c3 nonprofit organization run by and for adults living with cystinosis. We work to advocate for the needs of people living with cystinosis and educate the public about cystinosis.

Event details

2 March 2023
1007 E. Grand Ave, Des Moines, United States
Contact host