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Tune in to hear Jess Barnes talk about the amazing AKU Society on @bbcradio4 SUNDAY 7.54am & 9.25pm THURSDAY 6 MAY 2021 3.27pm The AKU Society in the UK is raising funds to launch the first ever pediatric study into Alkaptonuria aka Black Bone Disease. A disease that, if left untreated, causes bones to turn black…

The AKU Society in the UK is incredibly proud to announce that the European Commission (EC) has extended the existing marketing authorisation for nitisinone use in AKU. This is the culmination of years of hard work and dedication. “We hope this decision means that patients across Europe will now begin to be able to access nitisinone. With this…

SONIA 2 and DevelopAKUre – Results We are delighted to announce that all the data from the SONIA 2 clinical trial has now been analysed and very positive trends have been highlighted. Due to this, SOBI (Swedish Orphan Biovitrum) announced that they are going to apply to the European Medicines Agency (EMA) for market authorisation…

The study is designed to treat patients and find the optimal dosage of nitisinone to obtain maximal reduction in levels of homogentisic acid and maintain safe levels of tyrosine. The long term objective in the target population of pre-symptomatic patients is the prevention of the characteristic effects on joint cartilage and tendons. Clinical trial sponsored…

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…

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…

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…

Rich Clary, an AKU patient from California, is riding in the Tour de Pendleton 100-Mile Bike Event on November 2, 2013 to raise money for The AKU Society of North America. Please visit  http://fundly.com/100-mile-bicycle-event to read his story and donate to AKU.