The Adult Leadership Advisory Board (ALAB) continues their podcast series “Cystinosis Rare: Journey Into the Unknown” with episode 8...
read moreFebruary 28th marks the 12th annual Rare Disease Day (RDD). Observed on the rarest day of the year, the...
read moreAdvoSci Health hosted a Cystinosis Case Competition this fall semester. Students were tasked with learning foundational information about cystinosis...
read moreThe Dicks Family sat down for a candid conversation with Daniel Levine from Global Genes. During the latest podcast,...
read moreThis summer we reached a milestone – over $40,000 in scholarships awarded since our program’s inception. Congratulations to the...
read morePlease click here for the latest updates from Leadiant on the Cystadrops shortage. If you have further questions, please...
read moreInterim CRN President, Tim Wyman, has written an open letter to the cystinosis community. You can read it here.
read moreAVROBIO Announces 100% Kidney Substrate Reduction at 12 Months Post-Gene Therapy in...
read moreThe goal of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on...
read moreChildren’s Friend Inc. is studying the experiences in and barriers to accessing mental health services for families. For the...
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