In this section you can read various research news articles that have important topics relating to rare genetic disorders.
This section is for any parents or professionals who wish to read up to date information about syndromes and to broaden their knowledge.
The articles are ordered with the newest piece of research first and the articles can also be filtered by syndrome by using the filter.
We hope you find the research articles interesting!
Video Launch - Challenging Behaviour
We have launched a new video on the factors that lead to challenging behaviour. This video is available at the following link. You can give us feedback on the video by completing the survey that is available under the video. This video was made in partnership with the charity Cerebra.
Mental health difficulties in children with learning disabilities
Overview of the presentation This presentation was delivered by Chris Oliver and Jane Waite (pictured...
Rubinstein-Taybi Syndrome Video Release
Rubinstein-Taybi syndrome (RTS) is a rare genetic syndrome affecting approximately 1 in 100,000 individuals....
Bardet-Biedl Syndrome Press Release
New Research to Investigate Mental Health in Bardet-Biedl Syndrome (BBS) Researchers...
Cornelia De Lange
Anxiety in Cornelia de Lange syndrome
Presenter: Dr Hayley Crawford Date of presentation: 28th October 2017 Conference or event: Cornelia...
Cornelia De Lange
The Behavioural Phenotype of Cornelia de Lange Syndrome
Presenter: Prof. Chris Oliver Date of presentation: 6th November, 2017 Conference or event: The...
Cri Du Chat
Presenter: Prof. Chris Oliver Date of presentation: 2nd November Conference or event: Fonden Samrådet...
Challenging behaviour in fragile-X syndrome
Presenter: Dr Jane Waite Date of presentation: 24th September 2017 Conference or event: Fragile-X...
Exciting New Research in Autism Launched Today
A new research study investigating mental health in people with autism is being launched today, 25th October 2017. The study is a collaboration between leading investigators at the Cerebra Centre for Neurodevelopmental Disorders at the University of Birmingham, Aston University, and leading UK autism research charity, Autistica. Mental health problems affect 79% of people with autism, and managing these difficulties is a top priority for people living with autism. However, these dififculties, particularly for those who also have an intellectual disability, have been largely overlooked due to lack of research and support. For more information about this major new UK study click here. Researchers aim to recruit 5,000 autistic people, their families and carers to the 'Discover' research network by the end of 2017. To find out more and get involved please visit: https://www.autistica.org.uk/get-involved/take-part-in-research
New videos posted by The Fragile X Society, UK
Fragile X Society, UK have posted a series of new educational videos about Fragile...
Research Study: Sleep in Children with Angelman Syndrome
Jayne Trickett, Mary Heald and Chris Oliver, researchers from the Cerebra centre of neurodevelopmental...
Sleep: A New Cerebra Guide for Parents
A new guide for parents has been developed by researchers at the Cerebra Centre for Neurodevelopmental Disorders, and the Cerebra sleep team. This guide has been developed to help parents and carers understand the nature of sleep problems in children with intellectual disability and what can be done to improve sleep. Part one describes common sleep problems in individuals with intellectual disability and how these sleep problems are assessed. Part two gives a brief overview of sleep problems in specific genetic syndromes. Part three outlines some strategies which may help to reduce or improve sleep problems. Read the full guide here or download this PDF version