Williams Syndrome is a relatively rare neurodevelopmental condition caused by the sporadic deletion of approximately 25-28 genes on chromosome 7. Prevalence is reported to be approximately 1:20,000. The condition is associated with interesting aspects of cognition (e.g. a dissociation between relatively good language in comparison to poorer spatial skills), extraordinary facets of social behaviour (e.g. increased sociability but social vulnerability) and the presence of psychopathology (e.g. increased anxiety, sensory processing difficulties).
Across the various projects that we are running, we explore components of behaviour associated with children and adults who have Williams syndrome.
If you are interested in taking part in our work please contact Professor Debbie Riby.
We are currently recruiting individuals with Williams syndrome for a number of projects. Our general email for all WS research is firstname.lastname@example.org.
Professor Debbie Riby worked with the Williams Syndrome Foundation to produce flyers for families on 'Anxiety in Uncertain Times' as we are aware that anxiety levels at particularly high, and that for individuals with WS who are susceptible to heightened anxiety, who often prefer regular routines, and who may also have additional medical difficulties this is a particularly difficult time. This flyer has been distributed via social media and to all UK WS families via the WSF magazine for their members (April 2020 edition). The flyer has also been translated into several languages and distributed to families via support networks in these regions. You can find the English, French, Spanish, German, Dutch, Czech and Serbian versions of the flyer below.
We advise that WS families follow the guidance of Public Health England and further information is also available on the WSF website.
If you have any questions please email email@example.com.
Czech Williams Syndrome FlyerDutch Williams Syndrome Flyer English Williams Syndrome Flyer French Williams Syndrome Flyer German Williams Syndrome Flyer Serbian Williams Syndrome Flyer Spanish Williams Syndrome Flyer
Here are some other examples of the ways that we have been supporting families and seeking to make positive changes for those living with Williams Syndrome.
In October 2019 Professor Debbie Riby was invited to give a presentation to families from Serbia, Croatia, and Bosnia at a meeting of the Federation of Williams Syndrome (FEWS) charities in Novi Sad, just north of Belgrade. This was the very first meeting for WS families in Serbia following the launch of their new family support charity and it was fantastic to be invited to talk to everyone and to meet FEWS delegates from around Europe.
Debbie talked about anxiety in WS and current evidence of heightened anxiety in the literature. Families had some fantastic questions and discussions on recognising anxiety triggers, supporting anxiety needs and the everyday impact of anxiety.
During 2019 we have been distributing our translated anxiety booklets throughout Germany with £6,000 funding from Durham University and the help of Bundesverband Williams Beuren Syndrome (BVWBS; German WS Association). We are thrilled with the response from families and teachers and so far we have received feedback from over 75 parents and over 25 professionals (e.g. including teachers). This project is led by Dr Mary Hanley.
To access the German translations of the anxiety booklets please use the links below:
A guide for elementary school teachers (German)A guide for people who support adults with WBS (German)A Guide for Secondary Schools (German)
In May 2018 our 'Williams Syndrome Anxiety booklets' were distributed to families in Japan, having been translated into Japanese by our collaborators Dr Masahiro Hirai and Dr Kosuke Asada.
We are thrilled that our work may positively impact families in Japan (having also already been distributed throughout the UK, Ireland, France and to families in the US, Canada and Australia on demand).
With funding from a variety of charities including the Williams Syndrome Foundation (WSF UK), the Williams Syndrome Association of Ireland and the French charity Autour des Williams, we have been able to raise awareness of the anxiety needs of children and adults with Williams Syndrome.
Based on information from parents, we developed and distributed booklets on anxiety in Williams syndrome for families to share with teachers in order to start a conversation about anxiety support. We further developed this into adult booklets for carers. This package of booklets has now been distributed to families throughout the UK, France, Ireland, and has been modified / translated for families in America and Japan. We have recently collected data on the positive impact that these booklets have created in raising awareness of the need for anxiety support.
Since 2015 we have run a number of parent workshops on anxiety in Williams syndrome to help parents discuss anxiety identification and support techniques, we continue to run these events with support from the WSF throughout the UK.
Enquiries about the Centre for Neurodiversity & Development should be sent via the email below:
Department of Psychology Science Site South Road Durham DH1 3LE
Tel: +44 (0)191 334 3247