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See uplifting stories and photos of families living with Lowe syndrome in an inspirational way.

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Words From

Parents of Newly Diagnosed Boys

"Hearing my son had a syndrome I never heard of was tough news. Finding the LSA made this journey so much easier. We no longer feel so alone. Thank you for being there. "

LSA parent, anonymous

"The resources offered by the LSA were life changing. We no longer feel so alone. We feel more confident as we navigate this new medical journey."

LSA parent, anonymous

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Coordination of Rare Disease Patient Registry

If you or a loved one has been diagnosed with Lowe syndrome, you can make an important contribution to future research! Although the registry is currently available only in English, you may receive help from a trusted physician or family member to enter your information in English.


For New Patients


For Current Registrants

Update Your Info

For Researchers with IRB Approval


Watch a Video About CoRDS


Resources List

Links to other Medical and international resources.
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Symptoms and clues to assist in diagnosis.
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Well Care

Information about routine blood, kidney, urine, and imaging tests.
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Carrier Detection

Tests and methods to determine a carrier of Lowe syndrome.
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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.

Free Download