Because it really does take a village to save a rare child - you can help.
Support Our Cause
One Shot to Live
One Shot to Live is a documentary series created by the Rare Village, to tell the stories of the journey to creating a treatment while raising a family confronting a terminal childhood diagnosis.
Cure SURF1 Foundation
The Cure SURF1 Foundation was founded by a group of families who each have a child diagnosed with SURF1 Leigh Syndrome. Their mission is to advance research efforts related to SURF1 Leigh Syndrome.
Cure ATP6 helps fund a cure for Leigh syndrome resulting from a mutation in the MT-ATP6 gene. Leigh syndrome is a rare neurodegenerative disease that affects infants and children.
Sebastian’s Voice is a fund supporting the research and development of ASO therapy to find a cure for Skraban Deardorff syndrome (SDS). Donate and help them find Sebastian’s voice!