Kids Blowing Bubbles

patient registry

We are excited to share that we have partnered with Sanford Research to create a worldwide registry for Leigh syndrome patients. 

The goals of our registry are to identify and learn about our patient community from all over the world and to connect patients to research and clinical trial opportunities. 

For more information about the registry please read our IRB-approved Frequently Asked Questions. If you have any questions, comments, or interest in collaborating, please reach out to us at any time at