Share Your Story

The stories shared by our r(20) patients and families are of significant value to the r(20) community. They have helped us develop a common understanding of living with the syndrome.

If you have been diagnosed recently with r(20), are a carer or know of someone who suffers from r(20), then we would love to hear your story. 

PLEASE NOTE: If you have previously submitted a story and would like to provide an update, please click here to use the ‘Update Your Story’ form.