Big news! Our new paper — Expanding Research and Care for Leigh Syndrome: Efforts of a Patient-Led Advocacy Organization — is now published in the Journal Research Involvement and Engagement!
This publication highlights our journey from Cure SURF1 to Cure Mito Foundation, our growth as a patient-led organization, and the progress we’ve made together — from the Leigh Syndrome Global Patient Registry to data-sharing efforts with the Critical Path Institute and our expanding research initiatives.
None of this would be possible without our amazing families, researchers, and partners. 💚
Thank you to our collaborators across leading institutions and to Chan Zuckerberg Initiative for supporting our continued growth.
Most of all — thank you to our families. Your dedication, trust, strength, and shared commitment to progress make every milestone possible.
Please find the full paper here: Expanding research and care for Leigh syndrome: efforts of a patient-led advocacy organization | Research Involvement and Engagement
