If you have been diagnosed with AKU anywhere in the world, you can make an important contribution to our research into understanding, treating, and curing the condition. WHAT IS THE AKU PATIENT REGISTRY? The global patient registry is managed by the AKU Society and collects data on the progression and prevalence of AKU across…
Author: AKUNA
Radio Interview with Denise Higgins on Handi-Link Radio
Handi-Link is a community radio show on CJAM radio focusing on disability issues. Host Cam Wells compares similarities and differences between disabled and able bodied life and talks to those from the disabled community. Listen to this segment where Cam Wells interviews Denise Higgins about being diagnosed with AKU, living with AKU, and treatment &…
DevelopAKUre clinical trials update webinar
Prof. Ranganath will speak to about progress in the DevelopAKUre clinical trials to date, and answer questions from people living with AKU and their loved ones. Speakers: Professor Ranganath Medical Director of DevelopAKUre clinical trial, Helen Bygott Research Nurse for DevelopAKUre clinical trial, Lesley Harrison Patient Support Manager AKU Society, Rob Pleticha Online Patient Communities…
SONIA 2 clinical trials
The SONIA 2 clinical trials will take place in three test centres across Europe. The first patients will begin on April 7th in Piestany, Slovakia. Our Liverpool centre will be the next to start on April 14th. The final location to start will be the Paris centre in France, which is scheduled to begin on…
SONIA 1 Published Results
The main scientific paper from the first study (SONIA 1) was published last week in the Annals of Rheumatic Diseases. This study was the first part of the ongoing clinical trial, to find out what dose of nitisinone is best for patients. In today’s DevelopAKUre blog Oliver tells us about the results presented in the…