In Memory of Professor Rodney Grahame CBE (1932–2026)

Statement from Hypermobility.org

We were deeply saddened this week to hear of the passing of Professor Rodney Grahame CBE, a pioneering clinician, researcher, and tireless advocate whose work transformed global understanding of hypermobility-related disorders. His legacy is woven through every corner of the hypermobility and Ehlers–Danlos community, and his impact will be felt for generations.

Professor Grahame was a world-renowned expert in the Ehlers–Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD), recognised internationally for bringing scientific legitimacy, nuance, and compassion to a field that had for too long been overlooked. His leadership played a key role in improving recognition of EDS and HSD within medicine and in advocating for more accurate diagnosis, holistic care, and meaningful support for patients.

Throughout his distinguished career, which included senior clinical and academic roles at Guy’s Hospital, University College London Hospital, and Great Ormond Street Hospital for Children. Professor Grahame continued to push the boundaries of knowledge and education in connective tissue disorders. His dedication persisted well into his later years, including his presence at clinician education events as recently as 2024. He was widely admired for his empathy and attentiveness. Patients consistently describe feeling seen, heard, and believed by him at times when so many struggled for recognition.

Professor Grahame is also remembered for his powerful and enduring statement:

“No other condition in the history of modern medicine has been neglected in such a way as Ehlers–Danlos syndrome.” This truth continues to motivate clinicians, researchers, and advocacy organisations, including ours, to ensure that no one living with hypermobility conditions is left unseen or unsupported.

His contributions extended far beyond academia. He was an enthusiastic supporter of our volunteer team, a firm favourite at patient education events, not least for his warm, gentle wit and his ever-curious mind. His advocacy for compassionate, patient-centred care remains a guiding light for our community. He built pathways of hope, understanding, and progress, championed multidisciplinary care, encouraged research collaboration, and laid essential groundwork for the educational and clinical frameworks used around the world today.

Hypermobility.org is profoundly grateful for Professor Grahame’s unwavering dedication, his generosity of knowledge, and the dignity he afforded to those living with hypermobility. We join the entire global community in mourning his loss and celebrating the extraordinary legacy he leaves behind.

Our thoughts are with his family, friends, colleagues, and all whose lives he touched.

With respect and gratitude,

The Hypermobility.org Team