Join us in London for our 2026 International Patient Symposium, following the success of the 2024 event. This meeting is designed for individuals and families affected by Marfan syndrome, Loeys-Dietz syndrome, vascular Ehlers-Danlos syndrome (VEDS), Stickler syndrome and related conditions.
What to Expect
The programme will include expert-led talks from leading clinicians and researchers based in the UK and internationally. Sessions will focus on diagnosis, treatment, ongoing care and current research. There will be time for questions, giving attendees the chance to hear directly from specialists.
Breakout sessions will be available for each condition. These smaller groups allow for more focused discussion and shared experiences. General sessions will remain relevant to all conditions.
Connect with Others
This event offers a supportive space to meet others who understand life with a genetic aortic condition. You can speak with clinicians, connect with charities and share experiences with other families and individuals. Breakfast will be provided on arrival. A hosted lunch will give further opportunity to meet others and continue conversations from the morning sessions. Attendance is free, but registration is required in advance. Supervised activities will be available for children aged 5 to 12 during the symposium. Places must be booked ahead of time. Further details on how to register your child will be shared after event sign-up.
Delivered in Partnership
This symposium is organised in collaboration with leading UK charities supporting people with genetic aortic and connective tissue conditions. Together, we aim to provide trusted information, practical support and a sense of community. Whether you are newly diagnosed or have been living with a condition for many years, this event offers clear information and meaningful connection.
