Helpful External Organizations

Further Reading

Living with Lowe syndrome: A Guide for Families, Friends, and Professionals

Published in 2010 and based on a comprehensive survey in which 137 Lowe syndrome families participated, this book which provides medical and developmental information about Lowe syndrome. Includes genetics, research, effect on the family, and photographs. This fourth edition has been expanded to 116 pages (more than double the previous 1987 edition). Many families have relied on this book as an ‘operating manual’ for individuals with Lowe syndrome.

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