Patients join major clinical trial into devastating rare disease
Monday, June 16, 2014 Cambridge, 16th June 2014 – Patients with a rare genetic disease are today starting on a major international clinical trial of [...]
A new cause of osteoarthritis identified by research on rare disease, alkaptonuria
Tuesday, August 12, 2014 CAMBRIDGE, UK – 12/08/14: A new mechanism of joint destruction has been discovered for the first time during research in to [...]
“Because of our work on alkaptonuria, we are now able to add a new piece to the puzzle of an illness that affects millions.”
Tuesday, August 12, 2014 On Monday 11th August, the Daily Express ran an article about research involving a man with alkaptonuria which has provided [...]
“The early results of this trial indicate this treatment works and should, in time, pave the way for a cure for AKU patients.”
Thursday, January 29, 2015 On Sunday 25th January 2015 the Liverpool Echo have recently published an article about the success of the SONIA 1 clinica [...]
“A Brighton mum is appealing for help for a drug trial which could vastly improve her four-year-old son’s life.”
Tuesday, February 17, 2015 On Tuesday 17th February the Brighton & Hove News published a story about a Brighton mum appealing for help to support [...]
RCGP launches the first rare disease elearning module for Rare Disease Day
Tuesday, March 03, 2015 CAMBRIDGE, UK 27th February 2015: The Royal College of General Practitioners (RCGP) has partnered with rare disease charity t [...]
AKU Society launches crowdfunding campaign to support pioneering research into black bone disease
Thursday, March 19, 2015 Time is running out for charity to secure $30,000 to fund first study aimed at establishing correct age which new drug treat [...]
The tell-tell sign which revealed a four-year-old boy was sick: His black urine
Thursday, March 19, 2015On 19th March 2015. The Brighton Argus ran a story about Jess Barnes, and her fight to find a cure for Black Bone Disease for [...]
Meet Cambridge dad Nick Sireau, who quit his job to find a cure for his sons’ rare disease
Friday, March 27, 2015 On 27th March 2015 The Cambridge News ran a story about our CEO and Chairman, Nick Sireau, and his fight to find a treatment f [...]
Meet Cambridge dad Nick Sireau, who quit his job to find a cure for his sons’ rare disease
Friday, March 27, 2015 On 27th March 2015 The Cambridge News ran a story about our CEO and Chairman, Nick Sireau, and his fight to find a treatment f [...]