One of the unique things about our clinical trials is we encourage patients to talk about them. We think it’s important all patients are able discuss the trials openly, both in person and on our online communities RareConnect (https://www.rareconnect.org/en/community/alkaptonuria-aku) and .. ...more
Last week, the AKU Society headed up to Liverpool for four major events taking place over three days. On Wednesday, we attended a scientific meeting on the lessons we can learn from rare diseases affecting cartilage. On Thursday, we held our second patient workshop alongside the seventh AKU scie.. ...more
One of the amazing things about DevelopAKUre is how it unites people from all over the world. The mission to cure AKU crosses boundaries between cultures, countries and languages in such an incredible way. The DevelopAKUre consortium partners are based in 7 European countries: the United Kingdom.. ...more
As we discussed in a previous blog post (#), some of the most frequent questions we get about the clinical trials are why there is a non-treatment group. Following those questions, we are often asked why patients cannot choose which group they are in. Unsurprisingly the majority of patients want.. ...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 today’s blog Chief investigator Prof. Ranganath reinforces the need for SONIA 2 pat.. ...more