Professor Ranga is a busy full-time consultant in the NHS at Royal Liverpool University Hospital.
He was appointed a Professor in Musculo-skeletal Biology in 2012 at the University of Liverpool. There was no NHS service available for rare disease
Alkaptonuria in the UK when he developed an interest.
A patient with AKU, Robert Gregory approached Prof. Ranga to establish the AKU Society in 2003, and he remains a founding member, medical director and trustee to this day. At the time he got involved in AKU, systematic assessment of patients with this crippling disease was lacking. Exact numbers of AKU patients were unknown in UK and overseas. There was no effective treatment for AKU.
To address these issues, he established an NHS Highly Specialised Services funded National Alkaptonuria Centre (NAC), which is being carried out as a long-term observational interventional study employing off-label use of nitisinone. Prof. Ranga is the inaugural Director of the NAC. Patients in the NAC are able to access nitisinone free of charge and access to a multidisciplinary team of experts. He was also involved in carrying out a national survey that identified 81 UK, 450 European and 1000 patients worldwide. He has pioneered an assessment of AKU patients.
He is also co-ordinating an EC-funded international research programme that involves 3 studies in AKU. This will bring advances in AKU to all patients with AKU worldwide. In recognition of his contribution to AKU, he was awarded the inaugural 2012 RARE Champion of Hope for Medical Care and Treatment.
Our ‘Stand Up to AKU’ comedy night was on Sunday the 9th of June at the Hot Wate.. ...more
The Royal College of Nursing (https://www.rcn.org.uk/) (RCN) Congress is the biggest event o.. ...more
Today’s blog is written by the head of the Brazilian AKU Society (https://www.akubrasi.. ...more
This week's blog is written by AKU Society CEO Nick Sireau. Rare disease research has grown .. ...more