cystinosis

Cystinosis Sessions: July Video Call

The Adult Leadership Advisory Board (ALAB) is hosting a Zoom video call on July 10th at 4pm ET. TOPICS ...

Cystinosis Sessions: June Video Call

The Adult Leadership Advisory Board (ALAB) is hosting a Zoom video call on June 5th at 4pm ET. The...

May 2021 Cystaran Update

Please click here for the latest updates from Leadiant on the Cystadrops shortage. If you have further questions, please...

An Open Letter to the Cystinosis Community

Interim CRN President, Tim Wyman, has written an open letter to the cystinosis community. You can read it here.

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...

Cystinosis Awareness Day – A Message from Leadiant Biosciences

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

CRN at 2021 Virtual PAS

The Pediatric Academic Societies (PAS) connects thousands of pediatricians and other health care providers worldwide. This international gathering, delivered...

Cystinosis Session: May Video Call

The Adult Leadership Advisory Board (ALAB) is hosting a Zoom video call on May 1st at 4pm ET. The...

For Cystinosis Families: Free Needle Poke Wellness Kits

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

New Cystinosis Gene Therapy Data from AVROBIO

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

Tag: cystinosis