Cystinosis Ireland was delighted to be represented by Anne Marie O’Dowd and Denise Dunne at the CRN conference in Philadelphia last month. The conference was a hive of activity and information, with around 275 people with cystinosis, their families, researchers and clinicians attending. Christy and her team did an amazing job pulling together all the strands of support and learning which made for a valuable three days.
Key speakers included Prof Minnie Sarwal; Prof Stephanie Cherqui; Dr Paul Goodye; Dr Larry Greenbaum; and Dr Katherina Hohenfellner, and a range of break out sessions covered topics of discussion specific to different stages of living with cystinosis from the baby years to adult hood.
We will publish our summary report in due course for anyone interested in further details.