Living with Marfan and Loeys-Dietz Syndromes
An Information Day in Birmingham!
A day filled with expert information, peer support and so much more, our Patient Symposium in Birmingham is open for registration. This collaboration with Birmingham Women's and Children's Hospital will feature specialists discussing how to manage the symptoms of Marfan and Loeys-Dietz syndromes, while offering the opportunity to mix with fellow patients, ask questions direct of the expert and share stories. A dedicated playroom will be available for children, along with a fun space designed for teenagers. Places are limited – sign up today!
Food will be provided throughout the day, including breakfast and lunch.
(We are offering travel bursaries for low-income families – please email [email protected] for more information.)
Austin Court, IET
80 Cambridge St, Birmingham B1 2NP
(a 13-minute walk from Birmingham New Street Station)
9AM Registration & Breakfast
9.30AM Welcome: Victoria Hilton (Marfan Trust) & Marie O’Donnell (Genetic Counsellor, Birmingham Women & Children’s Hospital)
9.45AM Pectus Surgery: Mr Ian Hunt, Consultant Cardiothoracic Surgeon, St George's Hospital, London
10.15AM The Genetics of Marfan & Loeys-Dietz Syndromes: Dr Deborah Osio, Consultant Geneticist, Birmingham Women’s and Children’s Hospital & STP Trainee
10.45AM BREAK
11.15AM Musculoskeletal Problems/Pain Management with Marfan & Loeys-Dietz Syndromes: Dr Hanadi Kazkaz, Consultant Rheumatologist, University College Hospitals, London
11.45AM 101 Genomes: Romain Alderweireldt & Ludivine Verboogen (Romain and Ludivine are the parents of a child with Marfan syndrome. Their research project explores protective modifier genes that counter the cardiovascular implications of the condition.)
12.15AM Paediatric & Adult Cardiology: Dr Chikermane, Consultant Paediatric Cardiologist, Birmingham Women and Children’s Hospital & Dr Paul Clift, Consultant Cardiologist
12.45AM LUNCH
1.45PM The Psychology of Living with a Connective Tissue Disorder: Dr Suad Duale, Counselling Psychologist, Clinical Genetics Birmingham Women’s Hospital
2.15PM BREAK
| 2.45PM | Research at the Marfan Trust
with Dr Jose Aragon-Martin | Pregnancy – Share your Stories: Drs Chikermane, Clift & Osio, and Marie O'Donnell, Genetic Counsellor STP Trainee | Ageing Well with MFS & LDS: Dr Paul Clift |
| 3.15PM | Transitioning from Paediatric to Adult Care: Chikermane & Marie O’Donnell | Mental Health & Advocacy for Young People: Ellie Musgrave from Pectus Matters | Preparing for an Emergency: Joanne Jessup, Clinical Nurse Specialist, Marfan Trust |
| 3.45PM | Paediatric Ophthalmology & Marfan Syndrome: Mr Imran Masood | PEARS (Personalised External Aortic Root Support: Tal Golesworthy, PEARS Pioneer | Discussing the Impact of Diagnosis: Dr Suad Duale, Psychologist Clinical Genetics Birmingham Women’s Hospital |
4.15PM Return to Main Session
Presentation on Self-Advocacy
and
Farewell
