About this event

  • 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. 


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Standard pricing available until 07 October 2023.


RSM Fellow RSM Associate RSM Retired Fellow RSM Trainee RSM Student
£0.00 £0.00 £0.00 £0.00 £0.00

Non - Member

Student Trainee Consultant / GP / SAS Doctors AHP / Nurse / Midwife Non Healthcare Professional Patient / Carer / Relative
£0.00 £0.00 £0.00 £0.00 £0.00 £0.00


View the programme

Registration and informal question and answer with the Unique team
Welcome and introduction

Dr Sarah Wynn, Chief Executive Officer, Unique and Mr Craig Mitchell, Chief Operating Officer, Unique

Panel discussion: Living with rare chromosome and gene disorders

Dr Lucy McKay, Chief Executive Officer, Medics4Rare and families with lived experience

Breakout sessions
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

Tea and coffee break
Last on the list? - Looking after yourself and your emotional wellbeing

Ms Kym Winter, Psychotherapist and Chief Executive Officer, RareMinds

Closing remarks

Ms Sophie Sainty, Chair of Trustees, Unique

Close of meeting


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.

Domus reception

While you’re attending this event

Stay in the comfort of our hotel, Domus Medica, or hire one of our private dining rooms to socialise with your peers.

RSM members enjoy access to our enviable club facilities. For more information, please contact our team at domus@rsm.ac.uk or restaurant@rsm.ac.uk.

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