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

What is wrong with me?

by ElinFiona published 1 day ago
One comment

Have you ever felt a vacuum moving through your arms and legs, like your inner skin are ripped off? This happened to me January 2016. It was extrem...

Conor’s Story

by RareConnect team published 5 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 kid...

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.