SearchIn loving memory of Professor Rodney Grahame CBE 1932-2026
- 1 April, 2026
Professor Rodney Grahame CBE
A pioneer, clinician, and champion for the hypermobility community
We are saddened to hear of the passing of Professor Rodney Grahame, a world-renowned expert in the Ehlers-Danlos syndromes and hypermobility-related disorders, and a long-standing member of the EDS UK Medical Advisory Panel.
Professor Grahame played an important role in improving understanding of EDS and hypermobility at a time when these conditions were often overlooked. His work helped to build recognition of the complexity of EDS and HSD and the need for better diagnosis and care.
He supported EDS UK over many decades, including in the early development of the charity. Valerie Burrows, Founder Emeritus of EDS UK, shared her thanks during the celebration of Prof. Grahame’s 50 years of work within these conditions, in 2018:
“Almost 30 years ago, you agreed to support me when I started a national organisation for people with EDS. Your willingness to be a member of the Medical Advisory Panel was integral in giving validity to the charity. Thank you for your ongoing faithfulness and perseverance on behalf of those of us with EDS.”
Beyond his academic and clinical achievements, Professor Grahame was deeply committed to patients. He listened, validated experiences, and championed a more compassionate, holistic approach to care. Many individuals and families within the EDS and HSD community credit him with not only improving their medical care, but also giving them a sense of recognition and hope.
Most recently, Professor Grahame joined us at our GP education event in London in November 2024. It was a valuable opportunity for clinicians to build their confidence in recognising and diagnosing EDS and HSD, and to understand the associated conditions. It was great to have him there and to see his continued support for improving education and awareness.
Dr Hanna Kazkaz, consultant rheumatologist at UCLH and chair of our Medical Advisory Panel said “He built more than services — he built hope, opportunity, and a future for patients who needed someone to fight their corner. Working with him, I learned a lesson I carry with me every day: “rehabilitation starts now”. not tomorrow, not later, but from the very moment we meet a patient.”
Professor Grahame is widely known for his statement:
“No other condition in the history of modern medicine has been neglected in such a way as Ehlers-Danlos syndrome.”
His legacy is profound. We will build upon his work, and ensure that EDS and HSD are not neglected or forgotten. He will be remembered not only for his pioneering contributions to medicine, but also for his kindness, humility, and unwavering dedication to those he served.
Our thoughts are with his family, colleagues, and all who had the privilege of knowing him.