Rare Disease Day 2023

February 28, 2023 is Rare Disease Day. A movement created by Eurordis, Rare Disease Day unites an international community and promotes progress for all those affected. Share your cystinosis story with us at info@cystinosis.org or visit http://rarediseaseday.org/share-your-story.

Cystinosis Awareness Day

On May 7, 2023 the cystinosis community will come together in honor of Cystinosis Awareness Day (CAD). Now in it's sixth year, CAD is a global effort to raise funds and educate the general population about this disease. Join NORD for the "Living Rare, Living Stronger" Patient & Family Forum. A great way to advocate […]

2023 Family Conference – Nashville

Nashville Marriott at Vanderbilt University 2555 West End Avenue, Nashville, TN

Save the Date! The CRN Family Conference is back...and in-person for the summer of 2023. Join us July 13 - July 15 in Nashville, Tennessee. The event will take place at the Nashville Marriott at Vanderbilt University. We look forward to seeing you there. Agenda, travel scholarships and additional details will be announced in the […]