Welcome - Lowe Syndrome Community

What is Lowe Syndrome ?

Lowe Syndrome (also known as Oculocerebrorenal syndrome, OCRS) is a rare genetic disorder seen in males from early childhood and currently there is no cure. Lowe syndrome severely affects the brain, eyes, kidneys, bones and muscles, leading to physical and mental impairment.

Source: Participating patient organizations visible below

Lowe Syndrome Resources

More members stories

Latest Member Stories

Conor’s Story

by RareConnect team published 9 months ago
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Conor has Fanconi Syndrome, which affects the kidneys - this is what concerns me the most as a lot of boys with LS have renal failure. Conor’s kid...

Florian (born 4 May 1994)

by RareConnect team published 11 months ago
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Florian can make himself understood with sentences that contain 3-4 words. He eats independently with a fork when the food has been cut into bite-s...

Partners and Patient Groups

RareConnect is a patient-led initiative. Patient organisations partner with EURORDIS, itself an international patient organisation, to create communities and provide moderators from within their network. The following patient groups are official partners of this community.