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

Florian (born 4 May 1994)

by RareConnect team published 3 months ago No comment

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...

Conor’s Story

by RareConnect team published 3 months ago No comment

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 k...

Partners and Patient Groups

RareConnect is a joint venture of EURORDIS and NORD. The following patient groups are official partners of this community.