The Community Advisory Board (CAB) was created to establish a worldwide cystinosis committee under the mentorship of Eurordis, the representative body for rare diseases in Europe. The key objective of CABs is to engage with pharmaceutical companies in order to bring the patient perspective to clinical trials and other areas. Members of the CAB receive […]
CRN will join the American Society for Nephrology (ASN) and more than 13,000 other kidney professionals from across the globe at Kidney Week 2019 in Washington, DC. The world’s premier nephrology meeting, Kidney Week provides participants exciting and challenging opportunities to exchange knowledge, learn the latest scientific and medical advances, and listen to engaging and […]
The CRN is a proud participant in Giving Tuesday - a global movement encouraging people to "do good." This is our fifth year celebrating the event that has inspired millions to give, collaborate, and celebrate generosity. The Tuesday after U.S. Thanksgiving has been designated as the global day for giving back. It was created in […]
Welcome to our podcast series - Cystinosis Rare: A Journey into the Unknown. Lead by the Adult Leadership Advisory Board (ALAB), this series will focus on issues specific to our […]
Join the first video conference session created by the Adult Leadership Advisory Board - Saturday, March 21 at 4pm ET.
*Update* March 10, 2020 Over the weekend, the Centers for Disease Control and Prevention (CDC) updated its recommendations for older adults and people with kidney disease or other severe chronic medical conditions. They note that these groups appear to be at higher risk for experiencing more serious COVID-19 illness. Out of an abundance of caution […]
Following much consideration, Cystinosis Network Europe (CNE) and Cystinosis Ireland have decided to cancel the in-person International Cystinosis Conference planned for Dublin in July 2020 due the ongoing situation with COVID-19. The International Cystinosis Family Conference is now taking place online! On April 25th from 7am to 3pm ET you will have access to this […]
Join the LIVE video conference session on May 2nd!
Cystinosis Awareness Day is recognized as May 7th for the most commonly linked cystinosis mutation, the 57-kb deletion. This marks the third year we've come together on this day to support education, awareness, research, and fundraising for our rare disease. Months of planning go into Cystinosis Awareness Day. In-person events like 57 Miles for Cystinosis […]