Leadiant Biosciences, the distributor of CYSTARAN, is sponsoring a Town Hall meeting on February 3rd. The cystinosis community is invited to attend the event where the following topics will be […]
The goal of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives. This year's Rare Disease Day theme is : Rare […]
All are invited to join as the Adult Leadership Advisory Board hosts a live video call on Saturday, March 6th. This "Cystinosis Session" will focus on the topic of relationships. […]
Cystinosis Sessions: April Video Call All are invited to join as the Adult Leadership Advisory Board hosts a live video call on Saturday, April 10th. This "Cystinosis Session" will cover […]
The Pediatric Academic Societies (PAS) connects thousands of pediatricians and other health care providers worldwide. This international gathering, delivered virtually in 2021, offers opportunities for a global audience of physician-scientists, […]
Support the first annual Miles for Moose fundraiser.
The Adult Leadership Advisory Board (ALAB) is hosting a Zoom video call on May 1st at 4pm ET. The Cystinosis Session is open to all who would like to engage […]
Welcome to the 4th Annual Cystinosis Awareness Day! Started in 2018, Cystinosis Awareness Day was created to bring attention to our rare disease. Educating the general public and medical communities about cystinosis has the power to create a better future for the ~2,000 diagnosed and those awaiting a diagnosis. Since it's inception, Cystinosis Awareness Day […]
The Adult Leadership Advisory Board (ALAB) is hosting a Zoom video call on June 5th at 4pm ET. The conversation is open to the entire cystinosis community. This month's topic is stress. Let's discuss what we do for relief and ideas that may help in the future. To join, click: https://zoom.us/j/2663523786 Meeting ID: 266 352 […]
The Adult Leadership Advisory Board (ALAB) is hosting a Zoom video call on July 10th at 4pm ET. TOPICS The conversation topics include returning to the workplace after COVID-19 and the CRN Virtual Conference (held July 16-18, 2021). To join, click: https://zoom.us/j/2663523786 Meeting ID: 266 352 3786 Here are instructions to help with downloading Zoom. […]