Youth to Adult Transition Part 2- Q &A Panel with Adults Living with Cystinosis Part two of the youth to adult transition discussion is focused on personal experiences of adults living with cystinosis. Joining our panel on behalf of the adult community are Serena Scott (via mum Sue Scott), Kevin McCalla, Ashley Abedini, and Joe […]
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 is many. Rare is strong. Rare is proud. This theme is our call to action. Let’s elevate our voices as a united rare disease community. […]
Now in it's eighth year, Cystinosis Awareness Day was created to shine a spotlight on our rare disease. Spreading information about cystinosis has the power to create a better future for the ~2,000 diagnosed and those awaiting a diagnosis. How will you celebrate May 7th? There are many ways to show your support. Be Seen, […]