Rare Disease Week: In conversation with… Diana, GP and Mum to Sebbie

Join us on Teams on Wednesday 25th Feb from 12-1pm to hear from the amazing Diana, GP and Mum to Sebbie.

Sebbie is one of just 250 people in the world who have been diagnosed with a rare genetic condition called SHINE Syndrome. You will have the opportunity to hear about their journey to diagnosis and the daily challenges Sebbie and his family face in navigating life and their hopes for the future.

The session will be chaired by Sebbie’s Geneticist, Dr Frances Elmslie from St George’s University Hospitals NHS Foundation Trust. We would love for as many of you as possible to join the conversation, to learn and raise awareness about Rare Diseases.