Publications
For a copy of the full WSF Publications List Download PDF
With the exception of our half-yearly magazine (only available in the "Members Area") and our DVD, all these items are in PDF format and can be downloaded below. However, if you require hard copies there is a charge to non-members as listed on the publications list. If you wish to receive a copy of the DVD (£12.99 inc p&p) please click the donations button at the bottom of this page and write DVD in the comments box. Thank you.
Williams Syndrome Explained - Information Leaflet (3-fold)
This leaflet has been produced by the Williams Syndrome Foundation to explain what it is, how it is diagnosed, what are the clues, treatment, what is being done and information on help and support for families.
Leaflet Download PDF
What is the FISH test - Fact Sheet
This leaflet has been produced by the Williams Syndrome Foundation to explain what it is and what is involved.
Leaflet Download PDF
Williams Syndrome "What is" Card
Download PDF
UK Clinical Management Guidelines for Children with Williams Syndrome
The guidelines are aimed at doctors who are involved in the care of somebody with Williams Syndrome, who may not have very much experience of the condition because it is so rare. They are divided into sections based on age and list the features of Williams Syndrome that are most relevant for each age group, with recommendations for their management.
The guidelines have been developed by the guideline development group, listed on page 40 of the document, who are experts in the clinical management of people with Williams Syndrome. They are based on up to date published medical evidence which is listed in the bibliography and contains information on the various tests, screenings, assessments, referrals and treatments that people with WS may need at different stages of their lives.
Download PDF
Personal Health Record (Blue Book) for Williams Syndrome
The aim of this book is to provide a ‘snapshot’ of how WS affects you and your family, so that the different doctors you meet are able to decide how best to manage the symptoms. It also contains information that might be useful for you, your family, your doctors, teachers and other professionals. The information in the Blue Book is based on the UK Clinical Management Guidelines for Williams Syndrome (see above).
Download PDF
They are based on up to date published medical evidence and contain information on the various tests, screenings, assessments, referrals and treatments that people with WS may need at different stages of their lives. We hope you and your family, and/or your doctor(s), find the Blue Book useful.
Download PDF For Boys For Girls
Williams Syndrome Checklist for Carers - Caring for Adults
For most adults with Williams Syndrome, their GP will be their main WS doctor. Regular check-ups at the GP's surgery should ensure that any medical problems are identified and managed as needed (see checklist attached).
Download PDF
Williams Syndrome Growth Charts
For Girls Download PDF Front and Reverse
For Boys Download PDF Front and Reverse
Dental Advice for Williams Syndrome Children
Many children find difficulty in coping with routine dental treatment. This not only depends on the severity of their mental disability but also the degree of hyperacusis. Many children find the high-pitched noise of the drill a problem.
Williams Syndrome Health Surveillance
This leaflet has been produced by the Williams Syndrome Foundation for family doctors: it is very comprehensive and therefore covers all possible features of Williams Syndrome. Each person with Williams Syndrome will demonstrate some of' these features but not all of them. Even the rarest possibilities have been included to enable your doctor to manage your child's health efficiently.
Health Surveillance Download PDF
Profile of Special Educational Needs for Children with Williams Syndrome
A suggested 'Hit List' for anyone writing the Parental Profile (Appendix A) for a Statement of Special Educational Needs for their child.
Leaflet Download PDF
Guidelines for Parents - Children with Williams Syndrome
by Dr Orlee Udwin and Professor William Yule
Foreward
Williams Syndrome (WS) is a rare condition, occurring in approximately 1 in 20,000 live births. As a result, most people will not have encountered a child with WS before, and they may understandably know little, if anything, about the characteristics and difficulties associated with the condition. The purpose of this booklet is to provide information about this rare disorder, and to outline the difficulties that may be experienced by children with WS. Of course every individual is different, and not everyone with WS will show all of the characteristics and difficulties described below. The contents of this booklet are based on research undertaken over the last twenty-five years, which demonstrates that WS is associated with a number of distinctive behavioural and psychological features, which differentiate children with this condition from others with learning difficulties. It is hoped that this information and the advice and suggestions that follow will be of benefit to the families of children with WS. A separate information booklet for teachers is available from the Williams Syndrome Foundation, and families may choose to forward that booklet to their child's school.
Guide for Parents Download PDF
Guidelines for Teachers - Children with Williams Syndrome
by Dr Orlee Udwin and Professor William Yule
Foreword
Williams Syndrome (WS) is a rare condition, occurring in approximately 1 in 20,000 live births. As a result, most professionals will not have encountered a child with WS before, and they may understandably know little, if anything, about the characteristics and difficulties associated with the condition. The purpose of this booklet is to provide teachers with information about this rare disorder, and to elaborate on the special learning difficulties and needs of affected children.
The contents are based on research undertaken by the authors and others over the last twenty-five years, which demonstrates that WS is associated with a number of distinctive behavioural and psychological features which differentiate children with this condition from others with learning difficulties. Of course every child is different, and not everyone with WS will show all of the characteristics and difficulties described here. Nevertheless, it is hoped that this information and the advice and suggestions that follow will be of benefit to teachers, learning support assistants and others who work with children with the condition. A separate information booklet for parents is available from the Williams Syndrome Foundation.
Guide for TeachersDownload PDF
Guidelines for Families & Professionals - Adults with Williams Syndrome
by Dr. Orlee Udwin, Dr.Patricia Howlin and Mark Davies
Foreward
Williams Syndrome (WS) is a rare condition, occurring in approximately 1 in 20,000 live births. As a result, most people will not have encountered an individual with WS before, and they may understandably know little, if anything, about the characteristics and difficulties associated with this condition. The purpose of this booklet is to provide information about this rare disorder, and to outline the difficulties that may be experienced by adults with WS. Of course every individual is different, and not everyone with WS shows all of the characteristics and difficulties described below. The contents of this booklet are based on research undertaken over the last few years, and, in particular, on a study of the daily lives and adjustment difficulties of 70 adults with Williams Syndrome carried out in 1994/5. This research demonstrates that WS is associated with a number of distinctive behavioural and psychological features, which differentiate individuals with this condition from other groups of adults with learning difficulties. These characteristics, and their implications for the supported management of adults with WS, are discussed in detail throughout this booklet. It is hoped that the advice and suggestions that follow will be of benefit to those who live and work with adults with WS. A separate information sheet for employers and work supervisors can be obtained from the WS Foundation, and families may choose to forward that document to potential employers and supervisors who may not have time to read this more detailed booklet.
Guide for Families Families Download PDF
Guidelines for Employers & Supervisors - Adults with Williams Syndrome
by Dr. Orlee Udwin, Dr. Patricia Howlin and Mark Davies
What is Williams Syndrome?
Williams Syndrome (WS) is a rare, genetically determined condition occurring in approximately 1 in 20,000 live births. It is associated with a number of distinctive physical, behavioural and psychological features which differentiate affected individuals from other adults with learning difficulties. More in downloadable PDF.
Guide for Employers Download PDF
