- Date and time Mon 9 Oct 2023 from 8:30am to 1:00pm
- Location Royal Society of Medicine
- Organised by Medicine and Me, Unique - Rare Chromosome Disorder Support Group
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:
- An up-to-date understanding of the current state of research into the identification and possible treatment of chromosome/gene disorders.
- An update on Unique’s development and how it can help support families nowadays, including growth in size and therefore potential to revisit finding other families with similar rare chromosome disorder (RCD) or rare gene disorder (RGD) to connect to, and updates/guides they be unaware of
- A better understanding of what is or should be available in education and transition into adulthood in order to be better informed and able to advocate for their son/daughter and where to get help.
- A better understanding of the causes and solutions to specific common challenges e.g. sleep, behaviour, etc.
- An opportunity to discover other charities which could be helpful.
We encourage participants to connect via our social media channels and to establish ongoing informal support networks.
|RSM Fellow||RSM Associate||RSM Retired Fellow||RSM Trainee||RSM Student|
Non - Member
|Student||Trainee||Consultant / GP / SAS Doctors||AHP / Nurse / Midwife||Non Healthcare Professional||Patient / Carer / Relative|
View the programme
Speech, language and communication issues in children with rare chromosome and gene disorders
Ms Nicola Lathey, Director of Clinical Services, The Owl Therapy Centre
Mental health in people with learning disabilities
Dr Jane Waite, Senior Lecturer, School of Psychology, Aston University
The behaviour checklist: Changing the way we think about behaviour
Dr Hayley Crawford, Assistant Professor, Mental Health and Wellbeing Unit, University of Warwick
Speaker to be confirmed
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.