Welcome - Leigh Syndrome Community

What is Leigh Syndrome ?

Leigh syndrome is a rare genetic neurometabolic disorder that is characterized by the degeneration of the central nervous system. 

Source: UMDF

Leigh Syndrome Resources

More members stories

Latest Member Stories


by martinajakelic published 4 months ago

Hi, I am Martina from Croatia! I am writing about my niece Franka (2,8 years) who was diagnosed with Leigh syndrome with the mitochondrial mutation...

Logan's Story

by jenisenberg published 4 months ago

Hello! My name its Jen, and I am the mother to three amazing little boys. My youngest, Logan, was diagnosed with Leighs just before thanksgiving in...

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.