Medicine & Me: Living with a rare chromosome or gene disorder

Описание к видео Medicine & Me: Living with a rare chromosome or gene disorder

Recorded on Monday 9 October 2023 at the Royal Society of Medicine as part of the Medicine & Me series, providing a platform for patient focused charities and giving a direct voice to patients and their carers.

Run in association with the charity Unique, this conference brought together parents and carers of children and adults with rare chromosome disorder (RCD) or rare gene disorder (RGD)

The conference aimed to help participants better understand RCDs/RGDs diagnoses and find answers to specific medical or development challenges in their lives. It also includes an update on Unique's work, publishing information of RCDs/RGDs and how vital parent/carers’ contribution is to that process.

Medicine & Me meetings aim to provide an outline of current best practice, future updates of important conditions, and give a direct voice to patients and their carers and enable them to discuss their concerns and reflections on the impact of diagnosis, investigation and management. Physicians, surgeons and indeed all healthcare professionals, continue to learn from and be inspired to greater efforts to improve care by hearing directly from patients.

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