21 year old Nicole, flew all the way from Connecticut, USA to take part in the SOFIA Observational study last month. Here she tells us all about her reasons for taking part and her experiences coming to the Royal Liverpool University Hospital to take part in SOFIA .. ...more
Meet Pam Neagle, European Commission Coordinator for the Royal Liverpool University Hospital and Project Coordinator for the DevelopAKUre Consortium. What’s your role and what do you do for the DevelopAKUre consortium? I became involved in DevelopAKUre in March 2.. ...more
Professor Ranganath, the chief investigator of DeveleopAKUre, explains where we are with SONIA 2, the importance of SOFIA and why he enjoys working with AKU patients from all over the world. Now the 3rd visits are over for SONIA 2, what progress can you report? What are the next steps?.. ...more
(#) We have performed a gait analysis service for the National Alkaptonuria Centre (NAC) since the summer of 2013 and have been involved in the DevelopAKUre trials since 2014. The service has become a well-oiled machine with patients attending every month to our Movement Function Research L.. ...more
DevelopAKUre is a series of major international clinical trials, run by a consortium of 12 European partners. It aims to study a potential new drug, called nitisinone, and assess its potential effectiveness in treating the rare disease, alkaptonuria (AKU).
DevelopAKUre is co-funded by a grant from the European Commission. This website is run by a UK patient group, the AKU Society. Learn more about AKU on the AKU Society's What is AKU page.
In this week's blog, we talk to Brendan Norman, a PhD student at the University Of Liverpool, ab.. ...more