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ganetzky.bsky.social @ganetzky.bsky.social · 05/08/2025

Really delighted to see this paper out: Always a pleasure to collaborate with the CHAMP foundation. I think we have a really important message about how rare disease researchers can collaborate with families to identify outcomes that matter to real-life families link.springer.com/article/10.1...

link.springer.com

Single large-scale mitochondrial DNA deletion syndromes: scientific and family conference optimizes the collection of rare disease research outcomes - Orphanet Journal of Rare Diseases

Background The SLSMDS Research Network is a collaborative network comprising patient advocates, researchers, clinicians, and affected families seeking to improve outcomes for individuals with single l...

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