Information Day - 3rd Oct 2020 - SAVE THE DATE

ON: Saturday, 3 October 2020, 09.30 – 16.30
AT: (TBC) Lecture Theatre, National Heart and Lung Institute, Guy Scadding Building, Dovehouse Street, SW3 6LY (ENTRANCE IN CALE STREET behind the Brompton Hospital) MAP or Virtually due to Covid-19
Nearest Tube: South Kensington (10 minute walk)
No Parking
Following our move to the Guy Scadding Building, we can announce a planned one-day conference for families with Marfan syndrome as well as interested physicians. The physical event will take place, Covid-19 allowing. If it is difficult to hold a full physical event, we will try and offer a virtual or hybrid (mix of physical and virtual) event instead.
Until the Covid-19 situation is clearer, we cannot yet unfortunately confirm places and will not ask for payment until we are sure the conference can go ahead. We are very much hoping at this time that it will and will confirm either way as soon as we can. Please check our website for updates.
If you are interested, please see programme below, and for now, register your interest by emailing If you don’t have access to email, then please call +44 (0)20 7594 1605 to register. There is currently an upper limit of 100 participants in the the lecture hall. This limit clearly may reduce due to the pandemic, so please do register early.
Children: regrettably, children under sixteen are not allowed due to a lack of creche facilities.
Catering: we hope to be able to provide lunch at an additional cost (Covid-19 allowing), or you can bring your own.
Preliminary Conference Programme
09.10 to 09.50

09.50 to 10.00
Welcome/Amalgamation of Marfan Trust and Marfan Association/Support, Research and Education 
Michael Heath,  Chair, Marfan Trust 

10.00 to 11.00
Update on Aortic surgery
Chairman, Professor John Pepper, Royal Brompton Hospital 

11.00 to 11.30
AIMS Trial results (Irbesartan in Marfan Syndrome): Is it better, and how do we obtain it?
Dr Graham Stuart, Children’s Hospital Bristol

11.30 to 12.00
Dislocated lenses: What causes it and why?
Mr Aman Chandra, Consultant Ophthalmologist and Dr José Aragon-Martin

12.00 to 12.30
Q & A

12.30 to 14.00

14.00 to 14.30
How we handle the transition from Paediatric to Adult Marfan Clinic
Dr’s Nitha Naqvi and Christoph Nienaber, Consultant Cardiologists Royal Brompton Hospital

14.30 to 15.00
Pectus chest deformities: New treatment
Mr Ian Hunt, St Georges Hospital, London

15.00 to 15.30
Student Research Prize presentation: Pain Management in Marfan syndrome
Dr Natasha Anieh-Benno 

15.30 to 15.45
Presentation of Daniel Finkletaub Student Prize by Mrs Carole Finkletaub

15.45 to 16.30
Psychosocial Aspects of Marfan syndrome (speaker TBA)

16.30 to 17.00
Tea and farewell
Information Day - 3rd Oct 2020 - SAVE THE DATE
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