P.O. Box 50030 London, ON N6A 6H8 info@rett.ca (519) 474-6877

Resources

The Rett Syndrome Handbook

The Rett Syndrome Handbook is recommended reading for all new families and is a useful guide for health care practitioners who are not familiar with Rett syndrome. We offer to ship a copy of the book to all newly diagnosed families.

Download the Rett Syndrome Handbook

Nutritional Guide

This booklet has been produced by the Rett syndrome study team at the Telethon Institute for Child Health Research, Perth, Western Australia.

The aim is to provide a ready reference for families and carers on the best ways of improving the nutritional and digestive health of girls and women with Rett syndrome.

Download Nutritional Guide

Comprehensive Literacy For All

Grounded in the belief that all students can learn to read and write print, this book is a thorough yet practical guide for teaching students with significant disabilities. It explains how to provide comprehensive literacy instruction addressing these students’ needs, whether they are emergent readers and writers or students acquiring conventional literacy skills. General and special educators, speech-language pathologists, and other professionals will find concise research synopses and theoretical frameworks, practical lesson formats, guidance on incorporating assessment and using assistive technology, and more.

Buy on Amazon

Buy on Chapters-Indigo

Ontario Rett Family Group

This private FaceBook group is open to Canadian families caring for an individual with Rett syndome.

https://www.facebook.com/groups/480308855360671

2020 Ontario Rett Syndrome Medical Panel Webinar

 

Living with a rare disease can be an isolating experience. RareConnect was created by EURORDIS (European Rare Disease Organisation) and NORD (National Organization for Rare Disorders) to provide a safe space where individuals and families affected by rare diseases can connect with each other, share vital experiences, and find helpful information and resources.

Rare Connect Rett Syndrome Community

Growth Charts

Using data on over 700 affected patients in the Natural History Study of Rett Syndrome, these references are an accurate representation of growth. As a result of the study, clinicians have gained insight into growth patterns in Rett syndrome which should interpret measurements of height, weight, and head circumference.

Height 0-36 months
Weight 0-36 months
BMI 0-36 months
Head Circumference 0-36 months
Height 2-20 years
Weight 2-20 years
BMI 2-20 years
Head Circumference 2-20 years

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