Rare diseases Marfan, Loeys-Dietz & VEDS syndromes will stand tall in the spotlight on 31 August at our International Patient Day in London. Marking our first collaboration with the Marfan Foundation, TADCT & Annabelle’s Challenge, the symposium will assemble medical experts and patient advocates from across the globe to empower patients & their families with the information they need to live their best lives. It’s a rare opportunity for rare diseases, giving supporters the chance to hear directly from the expert and create connections with fellow patients. 

To book your free ticket, click here.


International Speakers includeDr Nitha Naqvi, Consultant Paediatric Cardiologist, Royal Brompton Hospital; Dr Sherene Shalhub, Professor of Vascular Surgery, University of Washington; Professor Tonia Vincent, Professor of Musculoskeletal Biology; Dr Alex Pitcher, Consultant Cardiologist, John Radcliffe Hospital, Oxford.
This affords an opportunity to ask questions directly of the medical expert! 

Subjects include: As well as discussing the medical aspects of Marfan syndrome & related disorders, topics will include patient-friendly and lifestyle subjects such as How to Self-Advocate; Living Well with a Genetic Condition; Physical Activity, Ageing Well and more.

Making Friends: Whilst offering breakfast and lunch, the symposium most crucially give patients and their families the chance to mix and mingle! Lunch will be themed around CREATING CONNECTIONS - that is meeting like-minded people on the same medical journey. And the afternoon sessions will be less formal and woven around 'break-out' sessions where you can choose from one of three different subjects.

This is a family-friendly event and there will be a fully supervised playroom for children.

What's more, we are offering travel bursaries for low-income households up to £100 per family. For further details on this, please email [email protected]

ADDRESS: Radisson Blu Edwardian Bloomsbury Street Hotel, London, 9-13 Bloomsbury St, London WC1B 3QD, United Kingdom

Marfan Trust, a CIO registered as a charity in England in Wales with charity number 1198847 at: c/o 24 Oakfield Lane, Keston, Kent, BR2 6BY. Contact us at [email protected] or by phone on + 44 (0)333 011 5256
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