Further Reading

Questions and Answers

Basic informational brochure and membership form. Features common questions and answers about Lowe syndrome. Available in English or Spanish. Also available online in English, Spanish, and French.

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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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Caring to Plan… Planning to Give

Pamphlet which describes various ways of giving to the LSA.

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On The Beam

A newsletter for parents, families and friends that features letters from parents and pictures of their sons, organizational news, research news, recommended resources and other helpful information. Published two times a year. A subscription to the newsletter is included in the annual membership fee. Back issues are available upon request for $3.00 each. (This publication is only available to members of the LSA. However, selected articles of a medical nature have been reprinted on this website.)


Where Can I Go For More Information?


The Lowe Syndrome Association (LSA), an international non-profit organization made up of parents, friends, relatives, and professionals. The LSA provides information, fosters communication among families, and supports research. It publishes a newsletter as well as this website, and sponsors conferences.