cystinosisrn

Cystinosis Awareness Day – Discovering a New Type of the Disease

In the late 1970’s, a hospitalization led to a cystinosis diagnosis which was uncommon at the time. Karen, and...

In honor of Cystinosis Awareness Day – May 7 – Leadiant Biosciences is commemorating this event with a letter...

Angel Aid is currently providing free trauma-less needle poke wellness kits for the cystinosis community. Their “Buzzy” kits were...

On March 8, 2021, the Cystinosis Research Network announced Tim Wyman as the new interim President. The position was...

Cystinosis Ireland and the CRN are delighted to announce they will jointly fund research project entitled “Perturbations in the...

February 12, 2021Dear Cystinosis Community: We wanted to share an update from Leadiant Biosciences regarding the CYSTARAN® (cysteamine ophthalmic...

In Honor of Laura’s 35th Birthday and Rare Disease Day. An article by Marybeth Krummenacker I was trying to...

AVROBIO Announces 100% Kidney Substrate Reduction at 12 Months Post-Gene Therapy in...

Thanks in part to volunteers at both the 2017 and 2019 CRN Family Conferences, this study was able to...

An announcement from Horizon Therapeutics: With the growing dry ice shortage there has been an increased demand for NanoCool...