In this week’s blog, Ciarán from the AKU Society explains what ‘Brexit’ means for DevelopAKUre and the SONIA 2 Clinical Trial. On the 23rd June this year, the United Kingdom (UK) held a referendum on its continuing membership of the European Union (EU). 51.9% of UK c.. ...more
Over the past few months, alkaptonuria (AKU) patients have been making their way to Liverpool from every corner of Europe to take part in the SOFIA Observational study. SOFIA is a cross-sectional observational study designed to underline at what age AKU patients begin to develop symptoms.. ...more
In this week’s blog, Oliver talks about attending the 8th European Conference on Rare Diseases and Orphan Products (ECRD) In Edinburgh. Where he was asked to present DevelopAKUre as a game changer in drug development, authorisation and access. The ECRD is the biggest pa.. ...more
The AKU Society, based in Cambridge UK, is one of the major partners in the DevelopAKUre consortium, we have been involved in the DevelopAKUre clinical trials since we helped found the consortium in 2012. Our role is to disseminate information about the trial, to recruit patie.. ...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