Cystaran Eye Drops Virtual Town Hall

On Wednesday April 27, Leadiant Biosciences and AllianceRx Walgreens Prime invite the cystinosis community to attend a virtual Town Hall. With Cystaran eye drops back in stock, the discussion agenda will cover recent approval and availability and an interactive Q&A session. Open to residents of the U.S.  Questions can be submitted in advance to […]

Cystinosis Sessions: July Video Call

Founding ALAB member, Brian Ensor shares his first-hand experiences with the AstraZeneca Vaccination Study. Join the Zoom call Saturday, July 9 at 4:00pm ET. Agenda items include the AZ study, open discussion and information on the ALAB’s call for new applicants.  Calls are held quarterly - we hope you are able to join us!  To […]

Rare Disease Day 2023

February 28, 2023 is Rare Disease Day. A movement created by Eurordis, Rare Disease Day unites an international community and promotes progress for all those affected. Rare Disease Day raises awareness for the 300 million people living with rare disease around the world and their families and carers; including our 2,000 cystinosis warriors. Here are […]

Informational Q&A: Cystinosis QoL Study

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, […]