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Resources – Rett Syndrome

Kaitlin Atkinson Family Resource Library

CHEO                                                                                     Printer Friendly Version
401 Smyth Rd., Ottawa, ON K1H 8L1
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Resource List for Parents

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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

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

Association québécoise du syndrome de Rett

Rett Syndrome – NORD: National Organization for Rare Disorders

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Local Contacts

Ontario Rett Syndrome Association
PO Box 50030
London, ON N6A 6H8

Association québécoise du syndrome de Rett
903, boulevard LaFayette
Longueuil, Québec J4K 3A8

401 Smyth Rd.
Ottawa, ON K1H 8L1
Physician Referral Required / par les médecins renvoi

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


Last Updated: July 2018
Links Tested: July 2018

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