Ophthalmology Cystinosis Forum Morning Session

Abstract

This 1-day meeting was held at the Austria Trend Savoyen Hotel, Vienna, Austria. The morning session consisted of a series of presentations by experts in the field of cystinosis. Prof Katharina Hohenfellner gave an overview of nephropathic cystinosis (NC) and provided her own experience of a multidisciplinary patient follow-up. Dr Alexey Tsygin provided his long-term experience of treatment with cysteamine and highlighted the importance of treating early and the role of cysteamine in treating and preventing long-term complications of cystinosis. Dr Roser Torra presented the findings of the T-CiS.bcn project, which aimed to develop a transition plan from paediatric to adult care through a multidisciplinary team. Dr Rachel Bishop provided an overview of the ocular manifestations of cystinosis followed by a presentation on the most recent data with gel-like Cystadrops® from Dr Hong Liang. The key themes from the morning sessions were: With the development of specific treatment for cystinosis, the disease paradigm has shifted from a paediatric illness where patients suffer end-stage renal disease (ESRD) by 10 years of age to a longerterm multisystemic illness with extra-renal complications Earlier treatment of NC with cysteamine can delay both the renal and extra-renal manifestations of the disease There are difficulties in transitioning from paediatric to adult care and this can lead to reduced treatment adherence; a multidisciplinary team may help to smooth the transition