Our AKU online communities are excellent opportunities to speak and meet others affected by AKU, whether you're interested in the DevelopAKUre programme or not. Living with a rare disease can be hard; many often report feeling lonely and isolated due to the lack of understanding surrounding their disease. Some can go their whole life without meeting another person affected by AKU.
That is why we work hard to bring patients together. By using our online commnities, patients can connect with each other by sharing their experiences, discussing their symptoms, learning about AKU and more.
We have profiles on Twitter & Facebook that are easy to find. But we also have specialist communities that we have set up to provide those affected by AKU with a safe place to discuss their problems and track the progress of their disease. The communities we have set up are moderated by patient advocates, ourselves, and dedicated teams with knowledge of AKU. They are more private and secure than Twitter or Facebook, meaning you can discuss problems without the worry of it being seen by those you don't want it to.
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