Join us for this educational conference, run in association with the charity Unique, which will bring together parents and carers of children and adults with rare chromosome disorder (RCD) or rare gene disorder (RGD) to meet each other, share experiences and hopefully develop new friendships and mutual support networks.
Unique will help participants better understand RCDs/RGDs diagnoses and find answers to specific medical or development challenges in their lives. Parents and carers will also be updated on Unique's work, publishing information of RCDs/RGDs and how vital parent/carers’ contribution is to that process.
The conference will involve sessions on the progress that is being made in the genomics field since their children were diagnosed. Additionally, there will also be workshops for certain common challenges such as; sleep, behaviour for children and adults with RCD/RGDs which will provide parents/carers with key information and strength to face these challenges through sharing those experiences in more intimate sessions led by specialists in those fields.
Participants will build their understanding of the educational paths open to children and young people with the wide spectrum of special educational needs resulting from their RCD/RGDs and how to obtain the support they need.
By attending this meeting, you will gain:
We encourage participants to connect via our social media channels and to establish ongoing informal support networks.
Dr Sarah Wynn, Chief Executive Officer, Unique and Professor Eamonn Sheridan, Clinical Geneticist, at present on secondment as Medical Adviser, NHS Genomics Unit
Dr Shwetha Ramachandrappa, Consultant, Clinical Genetics and Genomics, Guys Hospital NHS Foundation Trust, and Trustee, Unique
Ms Nicola Lathey, Director of Clinical Services, The Owl Therapy Centre
Dr Jane Waite, Senior Lecturer, School of Psychology, Aston University
Dr Hayley Crawford, Assistant Professor, Mental Health and Wellbeing Unit, University of Warwick
Dr Luci Wiggs, Reader in Psychology, Centre for Psychological Research, Oxford Brookes University
Ms Kym Winter, Psychotherapist and Chief Executive Officer, RareMinds
Ms Sophie Sainty, Chair of Trustees, Unique
Royal Society of Medicine, 1 Wimpole St, Marylebone, London, W1G 0AE, United Kingdom
Registration for this event will close at 1:00am on Sunday 8 October 2023. Late registrations will not be accepted.
The agenda is subject to change at any time
If the event is recorded, we are only able to share presentations that we have received permission to share. There is no guarantee that all sessions will be available after the event, this is at the presenter’s and RSM’s discretion.
All views expressed at this event are of the speakers themselves and not of the Royal Society of Medicine, nor the speaker's organisations.
This event will be recorded and stored by the Royal Society of Medicine and may be distributed in future on various internet channels.
