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Alkaptonuria Society

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Self-care for Rare – Research Update Summaries
Aug 28, 2026 · original
At this year’s Self Care 4 Rare event, Dr Juliette Hughes and Dr Brendan Norman gave an update on some of the alkaptonuria (AKU) research currently taking place at the University of Liverpool. For those who were unable to attend – or would simply like a reminder of what we discussed – here are some of the highlights. A growing programme of AKU research Our AKU research group at Liverpool is led by Dr Juliette Hughes and Dr Brendan Norman, working alongside a fantastic team of researchers, PhD and Master’s students and collaborators. Between us, we are looking at AKU from several different angles, from understanding why joints become damaged to exploring gene therapy and some of the less well-understood features of the condition. A major focus remains ochronosis – the build-up of dark pigment in tissues caused by homogentisic acid (HGA). Understanding exactly how this pigment forms, and h
Self Care for Rare 2026: Prioritising Self-Care with AKU
Aug 5, 2026 · original
What does self-care look like when you're living with AKU? For some, it means keeping active. For others, it’s finding ways to manage pain, prioritising mental wellbeing or connecting with people who truly understand the challenges of living with a rare condition. These themes were at the heart of our virtual Self Care for Rare event, held on 2nd July 2026. Bringing together expert speakers, lived experience and interactive community discussions, the event explored practical ways to support wellbeing and encourage people to make self-care a priority. Whether you joined us on the day or couldn’t make it, here’s a round-up of the key takeaways. Beginning with the Breath The day began with an interactive session led by Charlotte Saunders, Advanced Breathwork Coach and Experiential Empowerment Coach. Charlotte introduced breathwork as an accessible self-management tool that is always availab
Professor Lakshminarayan Ranganath awarded MBE for services to people with alkaptonuria
Jun 18, 2026 · original
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
Remembering Professor Norman B. Roberts
May 29, 2026 · original
Professor Norman B. Roberts was a brilliant scientist whose work continues to have major impact on the treatment and understanding of alkaptonuria (AKU). A Clinical Biochemist with a range of eclectic research interests, Norman will be remembered fondly by the AKU community particularly for his key role in developing the analytical foundations that enabled accurate measurement of key metabolites in AKU, advancing both research and patient care. Norman was instrumental in establishing a long-standing partnership between the AKU clinical and research groups based in Liverpool and Agilent Technologies, fostering a unique and highly productive collaboration between academia, clinical science and industry. This partnership supported the translation of cutting-edge technologies into clinical application and continues to advance analytical capabilities across many areas of AKU research to this
Voices of Women in AKU Science
Mar 6, 2026 · original
Back row (left to right): Juliette Hughes (Lecturer/PI), Ioana Comanici (1st year PhD student), Hazel Sutherland (PDRA), Rebecca Brown (3rd year PhD student) Front row (left to right): Harriet Willet (4th year PhD student), Jemma Clarke (Masters student), Daisy Quinn (2nd year PhD student), Megan Lewis (Masters student) About International Women’s Day International Women’s Day is an opportunity to recognise and celebrate the social, economic, cultural, and political achievements of women around the world while also serving as a call to action to advance gender equality. Across the AKU community, women play a vital role in improving understanding of the condition and supporting those living with it. At the AKU Society, our small team includes Hannah and Georga, alongside trustee Jess. We also work closely with many women at the National Alkaptonuria Centre (NAC) and with researchers at th
AKU Society 2025 Round Up
Dec 10, 2025 · original
It’s been an insightful and transformative year at the AKU Society. I’m Georga, Communications Officer here at AKUS, and we wanted to take a moment to look back on everything that’s happened in 2025, as well as share some of the exciting plans already taking shape for 2026. With Hannah and I only having worked together for seven months so far, this year has been full of brainstorming, learning, and trying out new ideas. Now, as we look ahead, we’re heading into 2026 feeling energised and inspired, with plenty of new projects on the horizon. Here’s a look behind the scenes at what we’ve been up to. Nick on RareonAir Kicking things off in early 2025, Nick appeared on the EURORDIS RareonAir podcast, where he reflected on his journey as a parent of two sons with AKU – and how that experience had inspired him to establish the AKU Society. He shared memories from the early days of the charity,
AKU joint donation – how can it help?
Oct 14, 2025 · original
Dr Juliette Hughes & Dr Brendan Norman . Department of Musculoskeletal and Ageing Science, University of Liverpool. October 2025. About us Brendan and Juliette completed their PhD studies at the University of Liverpool, beginning in 2015 and 2016 respectively under the supervision of Prof Ranganath and Prof Jim Gallagher. They now lead their own research projects at the University of Liverpool, working together with other lab members in the Liverpool AKU Research Group. Juliette and Brendan both research AKU with complimentary expertise. Brendan has vast expertise in the metabolic side of AKU, and Juliette has focussed mainly on the mouse model and musculoskeletal areas. Bone and Joint Action Week Bone and Joint Health National Action week (12 th – 20 th October) is a global initiative that promotes awareness, prevention, and treatment of musculoskeletal conditions. These affect millions
International Metabolic Health Day (10th Oct)
Oct 10, 2025 · original
Dr Brendan Norman & Dr Juliette Hughes Department of Musculoskeletal and Ageing Science, University of Liverpool. October 2025. A new global event to promote metabolic health October 10 th marks the first International Metabolic Health Day. This global event is designed to raise awareness and support for metabolic health and research into how metabolic balance affects overall wellness. “Metabolic health is the foundation upon which our vitality and resilience are built”, writes Dr Natasha Winters, organiser of the event and founder of the Metabolic Terrain Institute of Health. The Metabolic Health Day Terrain Ten™ and AKU The ‘terrain ten’ refers to ten key factors that influence metabolic health: Inflammation Insulin resistance Oxidative stress Hormonal imbalances Toxic burden Immune system dysfunction Poor mitochondrial health Microbiome imbalance Mental/emotional stress Nutritional de
No Two Stories Alike: Living with AKU Pain
Oct 3, 2025 · original
Not all pain can be seen, yet its effects can reach into every part of life. It may mean cancelling plans, stepping back from hobbies, or even stepping back from work – all changes that people don’t always associate with pain. And alongside these practical challenges come complicated emotions that can be just as difficult to carry. September is Pain Awareness Month -an opportunity to shine a light on the struggles people may encounter when pain becomes part of their lives. It’s also a chance to raise understanding of conditions like AKU, where pain can be one of the most common and challenging symptoms. To mark the month, we hosted an “Easing Aches and Pains” coffee catch-up . It was an open space for people to drop in, share as much or as little as they wished, and exchange tips, experiences, and questions. The conversation touched on many aspects of living with AKU pain – from the diff
Chris’s Story: Bringing AKU Awareness to the Football Pitch
Sep 10, 2025 · original
Raising awareness of Alkaptonuria (AKU) is at the heart of what we do at the AKU Society. As a rare condition, AKU is often misunderstood or overlooked. This lack of awareness can delay diagnosis, limit support, and leave patients feeling isolated. That is why patient voices are so powerful: those living with the condition every day understand its challenges better than anyone else. When patients share their stories, they not only help others with AKU feel less alone but also educate wider communities about the realities of living with a rare disease. One such inspiring voice is Chris Jenkins, who has found a unique way to combine his lifelong passion for football with his determination to raise awareness of AKU in South Wales. Chris, from Newport, is under the care of Professor Duncan Cole at the University Hospital of Wales, Cardiff. AKU has also touched his family in many ways. “I’ve

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