Marfan Information Day

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The event is being recorded and will be available to all those who purchase tickets]

Saturday 8th October 2022
9.30am - 4.30pm

This is our third virtual conference for folk with, or affected by, Marfan syndrome, as well as interested physicians. Informed by our helpline, the emphasis this year is on pain management, and support at school.

9:15 - 9:30 REGISTRATION 

09:30 - 09:50 WELCOME

9:50 - 10:20 PEARS UPDATE FROM WORLDWIDE EXPERIENCE
with Tal Golesworthy, C Eng MEI MRSC 

10:20 - 10:50 HOW TO DIAGNOSE MARFAN SYNDROME 
with Drs Fleur van Dijk & Neeti Ghali, London North West Healthcare University NHS Trust & Royal Brompton & Harefield NHS Trust .

10:50 - 11:20 MANAGEMENT OF BACK PAIN 
with Dr Fariborz Neirami, Consultant in Pain Medicine and Spinal Intervention, King's College Hospital

COFFEE BREAK

11:40 - 12:10 - THE EYE IN MARFAN SYNDROME & HOW TO TREAT ECTOPIA LENTIS 
with Mr Ben Clarke, Vitreoretinal Consultant, Gloucestershire Hospitals NHS Trust

12:10 - 12:30 GENETIC CAUSES OF DISLOCATED LENS IN MFS - RESEARCH APPROACH 
with Dr José Aragon-Martin, Director of Sonalee Laboratory, Marfan Trust

12:30 - 13:00  HOW TO IMPROVE THE SCHOOL EXPERIENCE FOR MARFAN CHILDREN 
with Patricia Pothecary BA Hons, Cert Ed, Dip Ed and Adv. Dip Ed

LUNCH

13:50 - 14:20 ORTHOTIC MANAGEMENT OF FEET IN MARFAN SYNDROME
with Toby Winkworth BSc Podiatry (Hons), P.G Cert in Sports Biomechanics, H.C.P.C
Royal College of Podiatry:

14:20 - 14:50 HOW TO MANAGE DURAL ECTASIA Dr Anne Child, MD FRCP

14:50 - 15:00 HOW TO IDENTIFY MUTATIONS
with Dr José Aragon Martin

15:00 - 15:30 STUDENT PROJECTS: CHILDREN'S BOOKS/MANAGEMENT OF TALL STATURE/LOEYS-DIETZ SUPPORT
with Sophia Kazmi, Dr Samuel Sussmes BM BCh, and Amy O'Reilly

15:30 - 15:45 - PRESENTATION OF DANIEL FINKLETAUB AWARD with Carole Finkletaub

COFFEE BREAK

16:00 - 16:10  HELPLINE ANALYSIS with Victoria HIlton

16:10 - 16:20  FUNDRAISING ACTIVITIES with Gurpreet Madan

16:20 - 16:30 CLOSING REMARKS with Dr Anne Child MD FRCP