Marfan Information Day: Saturday, 11 October

A window into the world of Marfan and Loeys-Dietz syndromes, our remote all-day conference features a wide array of expertise covering the many manifestations of these conditions. From practical tips on managing fatigue to the latest clinical updates on treatment for the eyes, aorta, chest, and more, this event is a one-stop resource for patients and families alike.

(This conference is being held on Zoom and will be recorded).

9.15am   Registration

9.30am   Welcome

9.45am   Treatment for Pectus Abnormalities:
                 Mr Joel Dunning, Consultant Thoracic Surgeon, James Cook University Hospital

10.30am  TEA BREAK

11am   Paediatric & Adult Ophthalmology 
              Mr Imran Masood, Consultant Ophthalmic Surgeon, Birmingham and Midland                                     Eye Centre.

11.30am The Musculoskeletal Manifestations of Marfan & Loeys-Dietz Syndromes
                  Dr Hanadi Kazkaz, Consultant Rheumatologist, University College Hospital,                                        London

12pm    Managing Fatigue, 
               Natasha Woodgate, Occupational Therapist

12.30 - 1.20pm LUNCH

13.20   Treatment of Aortic and Other Vascular Aneurysms
              Professor Christoph Nienaber, Consultant Cardiologist, Royal Brompton Hospital

13.50    Science in the Sonalee Laboratory
               Dr José Aragon-Martin, Research Director, Marfan Trust

14.20    Findings from the Nationwide Fatigue and Pain Questionnaire
               Dr Anne Child, Medical Director, Marfan Trust and Kannan Maheswaran 

14.50    Study of Pain
               Victoria Hilton, Marfan Trust

15.05    Marfan Trust Survey
              Joanne Jessup, Nurse Specialist 

15.20    Closing Remarks