Living with Marfan and Loeys-Dietz Syndromes

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.)

The full programme for the day will be announced soon and will feature the following:

• The Genetics of Marfan & Loeys-Dietz Syndromes with Consultant Geneticist Dr Deborah Osio
• Paediatric & Adult Cardiology with Consultant Paediatric Cardiologist Dr Ashish Chikermane & Consultant Cardiologist Dr Paul Clift
• Managing Pain and Musculoskeletal Problems (speaker to be confirmed soon)
• Cardiac Surgery (speaker to be confirmed soon)
• Advocacy with Ellie Musgrave from Pectus Matters
• Mental Health & Connective Tissue Disorders with Psychologist, Dr Suad Duale
• Transitioning from Paediatric to Adult Care with Consultant Paediatric Cardiologist Dr Ashish Chikermane
• Pregnancy with Consultant Interventional Cardiologist Dr Dawn Adamson
• Ophthalmology with Consultant Paediatric Ophthalmic Surgeon Mr Imran Masood
• Chest Wall Surgery with Consultant Thoracic Surgeon Mr Ian Hunt

- Many of these sessions will be informal and there will plenty of time to mix and mingle with fellow supporters.