Marfan Information Day

Save the Date: 9th October 2021

A virtual one-day conference for folk with, or affected by, Marfan Syndrome, as well as interested physicians, has been planned for Saturday 9th October 2021, 9.30 am to 16.30 pm.

“It was a first-class line-up with great use of technology and excellent time management” (a supporter talking of our 2020 conference, our most highly attended event ever held).

Updates on aortic surgery, children’s eyes, scoliosis management, psychological support and prenatal genetic diagnosis are planned. Student research projects will be reported, followed by an update on Marfan Trust activities including helpline and fundraising. Opportunities for breakout chat rooms and questions of the speakers have been built into the programme.

If you are interested please scroll down to see the conference programme, speaker bio's and to purchase your tickets. 

All you need to take part, is a smartphone, tablet, or PC, as well as an internet connection. 

Conference Programme

09.15 – 09.30 Registration Marfan Trust HQ

09.30 – 09.50 Welcome. Michael Heath, Chair, Marfan Trust

09.50 – 10.20 Update on Aortic Surgery - options and risks. Professor Ulrich Rosendahl, Royal Brompton Hospital

10.20 – 10.50 Care of Children’s Eyes. Mr Robert Henderson, Consultant Paediatric Ophthalmologist, Great Ormond Street Hospital and Moorfield's Eye Hospital

10.50 – 11.20 Pregnancy and Prenatal Genetic Diagnosis. Audrey Dearing, Genetic Counsellor, Guy's & St Thomas' Hospital Reproductive Services

COFFEE BREAK 

11.40 – 12.20 Psychological Support for all Ages. Dr Zoe Berger, Psychological Services, Great Ormond Street

12.20 – 12.35 Summer Studentships in the Sonalee Laboratory: Lauren Lau, Qasim Mansoor Ashraf and Husnaa Fathima Ali Azamathullah Khan Marfan Trust

12.35 - 12.50 Sonalee Laboratory, Research Update. Dr José Aragon-Martin, Research Director of Sonalee Laboratory, Marfan Trust

LUNCH 

13.40 – 14.10 Advances in Scoliosis Management for Children, Young Adults, and Older Patients. Mr Hilali Noordeen, Royal National Orthopaedic Hospital

14.10 – 14.30 The Role of Desmosine in Aortic Aneurysm. Dr Anna Choy, Dundee University

14.30 – 14.45 Is a Slim Build a Protective Factor in the COVID-19 Pandemic? Mohamed Abdelrazek and Thomas Whittaker, Medical Students of Cardiff University

14.45 – 14.55 Presentation of Daniel Finkletaub Prize. Carole Finkletaub

TEA BREAK 

15.10 – 15.35 Updating Marfan Trust Literature and Helpline Analysis, Dr Anne Child, Medical Director & Victoria Hilton

15.35 – 15.55 Fundraising Activities. Gurpreet Madan, Fundraising Manager, Marfan Trust

15.55  - 16.20 Closing Remarks Michael Heath, Chair, Marfan Trust

Speaker Bio's

Professor Ulrich Rosendahl, Royal Brompton Hospital

Mr Rosendahl is one of the world’s leading cardiac surgeons with significant technical and clinical experience in advanced complex cardiac surgery. 

He was appointed consultant cardiac surgeon at Royal Brompton Hospital in 2012. Prior to that he worked at the Heart Institute in Baden, Germany, and the Texas Heart Institute.

Mr Robert Henderson, Moorfield’s Eye Hospital

Mr Henderson has an expertise in both surgical and genetic paediatric retinal disease. He is one of only three dedicated paediatric vitreoretinal surgeons in the country and his expertise includes the management of FEVR, Coats disease, Incontinentia Pigmenti and Retinopathy of Prematurity as well as complex retinal detachments.

He is also a paediatric ophthalmologist and provides opinions for inherited retinal dystrophies; he operates on complex cataract including trauma and uveitis related complications. 

He is appointed jointly between Great Ormond Street Hospital and Moorfields Eye Hospital.

Audrey Dearing, GSTT Reproductive Services

Audrey joined the preimplantation genetic diagnosis (PGD) and general genetics team as a registered genetic counsellor at Guy's Hospital in 2019. She previously worked as a genetic counsellor at St George's Hospital, London in cancer and general genetics.

Audrey completed her BSc in Genetics from University College Cork, Ireland in 2013, and graduated with distinction from the MSc in Genetic Counselling in Cardiff, Wales in 2015. She achieved registration with the Genetic Counselling Registration Board (GCRB) in 2018.

Dr Zoe Berger, Psychological Services, Hospital for Sick Children, Great Ormond Street

Zoe is a consultant clinical psychologist for long-term health specialities at Psychological and Mental Health Services at Great Ormond Street Hospital for Children NHS Foundation Trust.

Mr Hilali Noordeen, Royal National Orthopaedic Hospital

Mr Noordeen was appointed as a consultant Orthopaedic and spinal surgeon at The Royal National Orthopaedic Hospital and Great Ormond Street Children’s Hospital in 1995, as well as the Hospital for Neurology and Neurosurgery, Queen Square.

He did his undergraduate training at The University of Oxford, where he was the President of the Oxford Union in 1983.

He is a Professor in spinal surgery, KUM, National University of Malaysia, and visiting professor University of Columbia, Missouri, USA.

He was awarded the Gold Medal for the FRCS (Orth) exam.

Ian Naldrett, Intensive Care Educator and Specialist, Royal Brompton Hospital

Ian Has worked in intensive care since 2010 and currently holds the position of Lecturer Practitioner for intensive care nursing across the Royal Brompton Hospital and University of West London.

Ian has an extensive critical care clinical and teaching background working in cardiorespiratory intensive care, working within the regional ECMO service. He has a particular interests in the care of Severe Acute Pulmonary Failure, working to better the outcome of these patients through nursing and medical interventions. Ian has studied in the areas of patient and family centred care and involvement, working towards optimising this within his clinical practice role.

Previous to being on the national board Ian was part of the southern region committee from 2013 until joining the national board in 2017.

Ian currently is the representative from BACCN for EfCCNa – European Federation of Critical care Nurse Associations and a regional advisor on the BACCN board.