Shared by The AKU Society, UK June 2022 marked the 10th anniversary of the Robert Gregory National Alkaptonuria Centre (NAC) offering life-changing support and treatment to AKU patients. First commissioned by NHS Highly Specialised Services in April 2012, the NAC opened its door to patients for the first time in June 2012, and has now…
Category: Uncategorized
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 &…
Give Now! Crowdfunding to Support AKU Disease Registry
Our ‘mother’ society in the UK has just launched a crowdfunding campaign to raise funds for a global Black Bone Disease registry in order to gather information about AKU patients around the world in one single place. This will allow all of the AKU societies representing patients throughout the world to make the case for access to the life-changing…
Support a UK Pediatric Study of AKU
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…
Nitisinone approved by the European Commission!
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 Nitisinone Trial Results
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…
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…