London Patient Symposium

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.

PROGRAMME:

International Speakers include: Dr 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