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NEW PUBLICATION

MY DAUGHTER HAS THE PRADER-WILLI SYNDROME:
WHAT DO I DO?

We want to tell you our experience as a family having a child affected with the Prader-Willi Syndrome. This is our testimony. We started writing this book in 1989, when we lived one of the saddest moments in the long process involving this pathology. Nowadays, after more than ten years, we want to share it with every one, including health specialists and families with children affected with this Syndrome. When Pía Macarena de Jesús was born in 1988, there was almost no experience in Chile about this pathology and only the power of love and perseverance of our family helped us to understand the big mystery. I believe that only people who have suffered a specific trouble like this can effectively help others. This is our mission and we hope this book can be a complement to understand the syndrome and help you to improve the quality of life of your children. This is the history of Pía, written by parents like You.

Molinet Family

AUTHOR: Carlos Molinet Sepúlveda

E-MAIL: jeanpia@starmedia.com

PHONE: 56-2-5592343

Please note this is not available from PWSA (UK) only by email or from IPWSO.


NEW PUBLICATION

BABIES AND CHILDREN WITH PRADER-WILLI SYNDROME:
A Handbook for Parents and Carers (revised edition, 2001)

This long-awaited revision of our handbook for babies and children with PWS is now available, and most members with children aged 10 and under will receive a copy very shortly. Thanks to grants and donations from a number of people and organisations, a free copy of the handbook is going to every child development unit and every special baby care unit in hospitals throughout the country, along with a copy of our recent publication, Our Babies. It is hoped that these booklets will raise awareness amongst health professionals, and will also provide a useful resource to give to parents with newly diagnosed babies.

The 52 page booklet is in full-colour with photos and covers almosts every aspect of managing the needs of a child with PWS, from early feeding to school and education. It is free to anyone with a child in the UK under 10 years age, £5 (inc p&p) to others. Overseas cost £8 (inc p&p). Available from: PWSA (UK), 125a London Road, Derby, DE1 2QQ, UK.

NEW FUNDRAISING LEAFLETS

We now have two new full-colour leaflets which are designed to help with your fundraising efforts.

"Harry has Prader-Willi Syndrome" tells Harry's story from birth onwards and how it has affected his family.

"Sarah has Praser-Willi Syndrome" contrasts a four year old girl with a grown up woman with the syndrome.

Both leaflets include information about PWS and PWSA (UK), as well as a form for people to complete and return if they would like to donate to our work. Copies of both leaflets are available free from the office.

 

PUBLICATION LIST & ORDER FORM

Click here to view a page containing a list of our publications. To obtain copies, print the form and post it to the office with a cheque, postal or money order.

On-line Versions of Some PWSA(UK) Publications

 
If you could view this picture you would see Mathew & Alex. Being a Brother or Sister of Someone with PWS

Educating the Child with PWS - A Guide for Parents, Teachers, Educational Care Staff, Educational Psychologists and Others concerned with the Education of a Child with PWS

Speech & Language in PWS - together with definitions of some technical terms.

Problems of Speech & Communication in Children with PWS - What it is and some suggestions for dealing with it.

Perseveration - What it is and some suggestions for dealing with it.

Being the Grandparent of a Child with PWS - a grandfather gives his view.

A Brief Summary of Medical Conditions - which affect people with PWS.

Benefits and allowances - including Invalidity Care Allowance..

endocrine disorders in PWS - now available as a pdf file..f

Behaviour Management - now available as a pdf file..

Brief Synopsis - now available as a pdf file..

Genetics - now available as a pdf file..

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The Prader-Willi Syndrome Association(UK)
Web page last updated 10thJune 2004.