It is with deep gratitude and respect that we remember Professor Rodney Grahame, who sadly passed away on March 29, 2026. Professor Grahame was a pioneer, an advocate, and, most importantly, a clinician who listened.
For over 50 years, Professor Grahame fought to change the world’s understanding of the Ehlers-Danlos syndromes (EDS), joint hypermobility syndrome (JHS), and hypermobility spectrum disorders (HSD). In an era when hypermobility syndromes were neglected, misunderstood and dismissed, he stood by his many patients, believed them, and, most importantly, gave their problems the attention they deserved.
While speaking at The Ehlers-Danlos Society Global Learning Conference in Nashville in 2019, he stated that EDS was “the most neglected condition in the history of medicine.” This was not merely an observation; it was a challenge to the medical community to see their patients and attend to their concerns in a more meaningful way.
His clinical and research achievements transformed the field. He was one of the most important figures in the recognition of joint hypermobility syndrome as a medical diagnosis. He advocated for the widespread use of the Beighton score, thus assisting countless clinicians in the diagnosis of hypermobility. Most importantly, he was one of the first people to establish that the disorders associated with hypermobility were not confined to the joints. He was one of the first to describe hypermobility as associated with fatigue, gastrointestinal problems, autonomic dysfunction, and more.
It is thanks to his dedication and work that what had once been considered “benign” were recognized as complex conditions. It is thanks to him that more people were educated about the conditions, more people received the medical help required, and more people were diagnosed.
However, the legacy of Professor Grahame goes beyond his life’s work and the accolades. It is measured in the people he has inspired and the lives he touched.
When we commemorated Professor Grahame’s 50-year milestone, we were graced with messages from his colleagues across the International Consortium. For many, this was the beginning of their own EDS journey. We listened to clinicians describe a pioneer, and from across the gaps, researchers said they had built on his contributions, and patients spoke of him and the tremendous impact he had on their lives.
They recalled a doctor who “took me seriously after 10 years of searching,” and a doctor who was “not only brilliant scientifically but also very empathetic, loving and kind.” They appreciated him for “going above and beyond,” “tirelessly campaigning,” and for providing recognition to the many marginalized and silenced organizations and voices. One of the messages captured the sentiment of many when he said, “We truly have done it on your shoulders.”
In 2019, in Nashville, Professor Grahame joined our community to speak about what people living with EDS and HSD have a right to expect from their doctor. It captured the essence of his life’s work, something people with these conditions needed to know and understand. It was not new to him, but the way he had always practiced medicine. He didn’t merely learn about EDS; he stood with those who had it.
He built bridges throughout his career and made the gap between patient and doctor, between disciplines, and between uncertainty and understanding. He has helped create new services, contributed to international diagnostic guidelines, and advised organizations that would go on to influence international standards of care. His work has been felt on every continent, every generation, and on hundreds of thousands, because of him, those who he helped to not be invisible.
“Professor Grahame, my dear friend Rodney, was such an advocate for our community and gave us belief and hope in a way that few other doctors have” said Lara Bloom, President and CEO of The Ehlers-Danlos Society. “He paved the way for getting these disorders the awareness and validation they deserved. I will miss him terribly and I am so grateful for all the memories we shared over the last 20 years of knowing him.”
The legacy of Professor Rodney Grahame is one of transformation. He leaves behind a profession that is more engaged, a community that is heard, and a future that is more hopeful because of his work.
“Rodney was the one who took me under his wing and helped shape everything that came after in my consultant career” said Dr. Alan Hakim, Acute Physician and Rheumatologist, and Chief Medical and Scientific Officer of The Ehlers-Danlos Society. “So much of what I know, the way I do things, and the ways I support our patient and professional community comes from him. We built a lot together, wrote a lot together, taught a lot together, but more than that, we shared huge amounts of fun along the way. I’ll always be grateful.”
We celebrate not only his achievements, but the way he achieved them – with compassion, humility, and always with a belief in his patients and this community.
Thank you, Rodney. Your legacy will live on.
