Dr Bart Loeys, Dr Alex Pitcher and Dr Hal Dietz (left to right)
Patients, their families, clinicians and scientists came to the John Radcliffe Hospital from around the world for the first meeting of its kind in Europe on a rare cardiovascular disease.
More than 160 people attended the Saturday, September 5 event on Loeys-Dietz syndrome, a treatable genetic disorder that affects the connective tissue in the body.
It affects fewer than one in 10,000 people and can result in enlargement of the blood vessels in the chest. In some cases these can tear suddenly and unexpectedly, which often proves fatal.
Attendees at the event included Dr Bart Loeys from Belgium and Dr Hal Dietz from the United States, who discovered the condition, which can be treated with surgery.
The all-day programme included talks from the two doctors and from clinicians from across the disciplines that are involved with the condition such as surgery, genetics and musculoskeletal.
Patients came from throughout the UK as well as from Germany, the United States and the Netherlands.
They had the opportunity to ask questions and were encouraged to give their stories and perspectives and suggest ways of improving support in the UK.
Many expressed a willingness to take part in research studies at Oxford University Hospitals NHS Trust (OUH) to try to find improved ways of helping patients.
Feedback from patients was very positive. Among those who attended was Oxford’s Max Harris, 27, who underwent potentially life-saving aortic surgery at the John Radcliffe earlier this year.
After giving a talk about his condition, he said: “The day was a great opportunity to meet others with the condition and to have a dialogue between patients and specialist doctors”.
The event was supported by Oxford Radcliffe Hospitals Charitable Funds and by the NIHR Oxford Biomedical Research Centre (BRC).
The BRC is a collaboration between OUH and the University of Oxford to fund medical research and its support facilitated the involvement of patients and their family members in discussions about future research directions.
Meeting co-organiser, Dr Alex Pitcher, Clinical Lecturer in Cardiology at the University’s Radcliffe Department of Medicine and Honorary Specialist Registrar at OUH, said: “It was a real privilege to meet so many patients with Loeys-Dietz Syndrome and their families, and we are delighted to be able to learn so much from them and from Dr Loeys and Dietz.
“We hope to be able to use this learning to help our patients in the future, and I think the developments in the field are really changing the outlook for these patients when they are looked after in specialist environments.”