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Resources – Rett Syndrome


Kaitlin Atkinson Family Resource Library

Children's Hospital of Eastern Ontario                                                    Printer Friendly Version
401 Smyth Rd., Ottawa, ON K1H 8L1
613-738-3942
library@cheo.on.ca
Follow us @CHEOfrl


Resource List for Parents

Web Sites

Local Contacts

Resource List for Parents

Building bridges through sensory integration / Yack, Ellen -- Weston, ON: Print Three, 1998.
Written by three occupational therapists, this book offers a combination of theory and strategies. It is a useful tool for those working with young children, but also broad enough to be adapted for older children and adults.
FAM RJ 496 .S44 Y34 1998


Educational and therapeutic intervention in Rett syndrome -- Clinton, MD: International Rett Syndrome Assoc. 1995.
FAM RJ 506 .R47 E38

Keeping Katherine: a mother's journey to acceptance / Zimmermann, Susan -- New York: Three Rivers Press, 2004.
A story of personal transformation that reminds us that it isn’t what happens to us that shapes our humanity, but how we react, Keeping Katherine shows the unconditional love that exists in families and the gifts the profoundly disabled can offer to those who try to understand them.
FAM HQ 759.913 .Z56 2004

 
Pathways to learning in Rett syndrome / Lewis, J.E. -- London: Rett Syndrome Association (U.K.) 1996.
Parents and teachers of girls with Rett Syndrome will welcome this book, which offers a greater understanding of, and insight into, their potential to learn and develop.
FAM RJ 506 .R47 L48


The Rett syndrome handbook / Hunter, Kathy -- Clinton, MD: International Rett Syndrome Association, 1999.
A complete and comprehensive resource dealing with all facets of Rett Syndrome in words you can understand from those who understand.  A valued resource, now expanded and revised in this second edition.
FAM RJ 506 .R47 H86


Silent angels: the Rett syndrome story [VHS] -- International Rett Syndrome Assoc. 2000.
Silent Angels: The Rett Syndrome Story, hosted by Julia Roberts, tells about the amazing stories of families and researchers struggle leading to the discovery of the gene that causes the rare neurological disorder known as Rett syndrome.
FAM RJ 506 .R47 S54 VIDEO


Understanding Rett syndrome: a practical guide for parents, teachers, and therapists / Lindberg, Barbro -- Toronto: Hogrefe & Huber, 2006.
This book describes the difficulties and challenges of girls and women with Rett Syndrome. It proposes solutions to help them in everyday life with regards to social, physical and ethical aspects.
FAM RJ 506 .R47 L56 2006

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Web Sites

Ontario Rett Syndrome Association

Rett Syndrome – CHEO / Syndrome de Rett - CHEO

International Rett Syndrome Association

Rett Syndrome – MedlinePlus from the U.S. National Library of Medicine

Rett Syndrome Research Trust

Rett Syndrome Information Page – From the National Institute of Neurological Disorders and Stroke


Le syndrome de Rett – Fédération québécoise de l’autisme

Rett Syndrome – NORD: National Organization for Rare Disorders

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Local Contacts

Association québécoise du syndrome de Rett
602-6525 chemin de la Côte Saint-Luc
Côte St. Luc, Québec H4V 1G5
514-486-1311
aq_syndromederett@outlook.com


CHEO
401 Smyth Rd.
Ottawa, ON K1H 8L1
Physician Referral Required / par les médecins renvoi
613-737-7600


This guide provides medical material for information purposes only and is not intended to replace the advice of your physician. The information may not always apply to your individual situation.

The guide represents material available in the Family Resource Library collection at CHEO. It is not intended to be an exhaustive list. Your local public library may also be able to provide valuable information.

If you require materials in alternative formats, please contact the library at 613-737-7600 ext. 2157 or at library@cheo.on.ca.


 

Last Updated: May 2016
Links Tested: May 2016

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