Update Videos

In 2018 The European Commission asked us to create a video showcasing our work. 

Here we describe our work with AKU patients as we near the end of a clinical trial for the drug and look to the future, considering how our research in this project will lead to new treatments for other diseases.

March 2015

This video introduces AKU patients and brothers Arnold and Marcel from the Netherlands. They discuss their experiences of being enrolled in our DevelopAKUre clinical trials.

This video introduces AKU patients Charlotte from Denmark and Anita from Sweden. They also share their experience of being enrolled in our DevelopAKUre clinical trial.

We talked to patients enrolled in our DevelopAKUre clinical trial, explaining why the monitoring arm is important and how the clinical trial has benefitted them.

This video introduces Helen, one of the research nurses at the Royal Liverpool University Hospital. Helen talks about her experience of being involved in our DevelopAKUre clinical trial.

In September 2015 Vwe talked to Prof Ranaganath who gave an overview of the clinical trial programme, why each part is important and states what progress has been made.

In July 2015 we heald  a webinar on the progress of the DevelopAKUre clincal trials  The focus was mainly around SONIA 2, but patients were able to ask their questions about all aspects of the trials. You can view the full recording here:



Welcome To DevelopAKUre

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.


DevelopAKUre Blog

SONIA 2 – Controlling Protein to Support Nitisinone Treatment

In today’s blog Chief investigator Prof. Ranganath reinforces the need for SONIA 2 pat.. ...more

Introducing PhD Student Brendan Norman

In this week's blog, we talk to Brendan Norman, a PhD student at the University Of Liverpool, ab.. ...more