The goal of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives. This year's Rare Disease Day theme is : Rare is many. Rare is strong. Rare is proud. This theme is our call to action. Let’s elevate our voices as a united rare disease community. […]
Welcome to the 4th Annual Cystinosis Awareness Day! Started in 2018, Cystinosis Awareness Day was created to bring attention to our rare disease. Educating the general public and medical communities about cystinosis has the power to create a better future for the ~2,000 diagnosed and those awaiting a diagnosis. Since it's inception, Cystinosis Awareness Day […]
Mark your calendars for the 2021 CRN Family Conference!
On May 7, 2022 we celebrate the 5th Annual Cystinosis Awareness Day. This is an opportunity to educate the world about cystinosis, a rare disease that impacts 2,000 patients and their loved ones. Please join us in commemorating this event. Here are a few suggestions on how to participate: Check out the Cystinosis Warrior Impact […]
We will host an informational session on the CRN funded study "Development of a patient-reported outcome to measure the health-related quality of life of children and adolescents with cystinosis: QUALIFY-US" The research team will be available to explain the project and what participation would involve. Attendees will have the opportunity to ask questions. March 9, […]
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 […]
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. For agenda, travel scholarships and more details, click here. We look forward to seeing you there!
See you in Cincinnati, Ohio! On May 4th, we are gathering for an in-person meet-up at the Cincinnati Marriott River Center. Join us for a day of connection, education, and celebration commemorating the 7th Annual Cystinosis Awareness Day. Registration is required and is now closed. Please contact Chelsea with questions at chelseam@cystinosis.org. Draft Agenda 8:30a […]
The CRN is hosting an in-person event for healthcare professionals. Join us May 31, 2024 at The New York Academy of Medicine. Healthcare providers with a desire to learn more about comprehensive care in rare disease are encouraged to attend. Registration includes meals, refreshments and cocktail hour. See the draft agenda and register below to […]