The AKU Society is delighted to announce that Professor Lakshminarayan Rao Ranganath has been appointed a Member of the Order of the British Empire (MBE) in the King’s Birthday Honours 2026, for services to people with Alkaptonuria.
The award recognises more than two decades of collaborative work by patients, clinicians, scientists, patient organisations and industry partners to improve the understanding, diagnosis and treatment of alkaptonuria, or AKU, an ultra rare genetic disease also known as Black Bone Disease.
Professor Ranganath is co-founder and trustee of the AKU Society patient group and has played a central role in the development of specialist clinical care and research for the condition. He was also inaugural director and founder of the Robert Gregory NHS National Alkaptonuria Centre at the Royal Liverpool University Hospital – the world’s first centre for the treatment of this devastating condition. He coordinated DevelopAKUre, a European consortium that brought together 12 organisations from across academia, healthcare, industry and the patient community to investigate the drug nitisinone as a treatment for AKU.
DevelopAKUre conducted three clinical studies, including the major SONIA 2 phase 3 clinical trial – said to be the largest ever clinical study of an inborn error of metabolism. This work demonstrated that nitisinone could substantially reduce levels of homogentisic acid, the substance responsible for the progressive damage caused by AKU, and slow the progression of the disease. The programme led to the approval in 2020 by the European Medicines Agency of nitisinone as the first pharmacological treatment for adults with AKU. The FDA later approved nitisinone in 2025 following a parallel programme by collaborators at the National Institutes of Health.
The success of DevelopAKUre depended upon the participation and commitment of people living with AKU, many of whom travelled considerable distances to take part in clinical studies. It also reflected sustained cooperation between clinical teams, laboratory researchers, statisticians, pharmaceutical partners, regulators and AKU patient organisations across Europe and beyond.
Professor Ranganath said:
“I am deeply honoured to receive this award. I see it as recognition of the extraordinary collective effort that has taken place over many years to improve the lives of people with AKU. None of what has been achieved would have been possible without the patients and families who participated in the research, or without the dedication of our clinical, scientific, industry and patient-organisation partners.”
Dr Nick Sireau, trustee of the AKU Society and father of two children with AKU, said:
“We are delighted that Prof Ranganath has received this honour. Although he would be the first to emphasise that progress in AKU has been a collective achievement, his sustained leadership and determination helped bring together the people and organisations needed to turn many years of research into an approved treatment.
“Above all, this award recognises what can be achieved when patients, clinicians, researchers and industry work together around a shared objective. It is a wonderful moment for the entire international AKU community.”
Alkaptonuria is an extremely rare inherited condition in which the body cannot fully break down homogentisic acid. Over time, the acid accumulates and damages cartilage, bones, joints, heart valves and other tissues. The condition is sometimes known as “black bone disease” because of the dark pigmentation it causes in connective tissue.
The AKU Society was founded in 2003 to support people affected by the condition and accelerate research into effective treatments. It continues to work internationally to improve access to diagnosis, specialist care and treatment, while supporting further research into AKU.
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About alkaptonuria
Alkaptonuria is a rare inherited metabolic disease caused by a deficiency of the enzyme homogentisate 1,2-dioxygenase. This causes homogentisic acid to accumulate in the body, resulting in a process known as ochronosis and progressive damage to joints and other tissues.
About DevelopAKUre
DevelopAKUre was a European Commission-funded consortium involving 12 partners. It brought together patient organisations, hospitals, universities, researchers and industry to investigate the safety and effectiveness of nitisinone in people with AKU.
The programme included three studies: SONIA 1, SONIA 2 and SOFIA. Its findings provided evidence that led to the approval of nitisinone as the first pharmacological treatment for adults with AKU.
About the AKU Society
The AKU Society is an international patient organisation working to improve the lives of people affected by alkaptonuria. It provides patient support, raises awareness, promotes research and works with clinical and scientific partners to improve diagnosis, treatment and care.
Media enquiries
Georga Chilton, Communications Officer: georga@akusociety.org
Website: www.akusociety.org