We are hugely grateful to Kidney Research UK for featuring cystinosis in their recent report ‘Collectively common: the devastating impact of rare kidney diseases in the UK’, calling for investment, innovation and quality care into rare kidney disease in the UK. This excellently put together independent review profiles the stories of two families and their experiences of cystinosis, as well as a piece from the paediatric clinician for both these families.
Often rare disease feels like it exists in isolation, however reading a report like this reminds us that we are part of a wider network of patients, families, clinicians and researchers who have shared experiences and similar challenges. The summary and recommendations in this report really resonate with our aims at Cystinosis Foundation UK. Elements like diagnostic challenges, healthcare challenges, access to new medicines, clinical trials, enhancing the rare kidney disease registry (RaDaR) and lack of economic evidence are common to many more diseases. This is welcome reminder that by collaborating with others, together we are stronger.
Click this link to read the report and the news story on the Kidney Research UK website.