St George’s hosted a European VASCERN primary and paediatric lymphoedema clinical meeting this month with representatives attending from all over Europe.

VASCERN is a platform that gathers the best expertise and aims to provide accessible cross-border healthcare to patients with rare vascular diseases. It is made up of 24 European Reference Networks (ERN) on rare vascular diseases including the primary and paediatric lymphoedema working group. This working group consists of nine specialist clinics across Europe that produces guidelines, research and education on lymphoedema.

As St George’s is one of the leading centres in Europe for primary and paediatric lymphoedema, the Trust is a member organisation of the ERN and hosted the second European primary and paediatric lymphoedema clinical meeting at St George’s on 12 and 13 September.

The aim of the working group is to standardise care by shared learning across Europe as each organisation is committed to improve diagnosis, treatment and care for and with patients to overcome the challenges of rare diseases.

The two day event consisted of a day of education talks while the second day was dedicated to meeting with patients with complex rare genetic conditions that may be challenging to diagnose or treat. The event also allows for management and educational tools to be created and used post-event across Europe.

Dr Kristiana Gordon, Consultant in Dermatology and Lympho-Vascular Medicine and Clinical Lead for Lymphoedema at St George’s, said: “Hosting shared clinical learning days is something we excel at here at St George’s. We are one of two sites in the UK to have a consultant led service and we host clinical days twice a year with the team from the Royal Derby Hospital [the other UK site], plus the ERN working group days too.”

She added: “It’s fantastic to have European experts together under one roof at St George’s for research and education purposes. We’re stronger together as a group of multi-disciplinary clinicians striving to improve the care we provide to our patients. Discussing rare cases together is beneficial to both the clinicians and the patients – and what’s great as well is that our patients very much want to be involved in these clinical study days too.”

There is an annual VASCERN meeting where all working groups meet. In addition the individual working group meets once or twice a year face-to-face and countries take turns in hosting. This month’s meeting is the first full ERN primary and paediatric lymphoedema meeting held in the UK and the second clinical meeting this year. They also engage in monthly conference calls which have a direct benefit to patients and parents of patients.

The shared materials produced by the working group are then hosted on the VASCERN website and available in several European languages for both patients and clinicians alike.