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!
Cure SPG4 Foundation
Cure SPG4 Foundation’s mission is to increase awareness of SPG4 Hereditary Spastic Paraplegia, provide a resource for patients and their families, and fund research to find a cure.
Cameron’s Crusade is a fund supporting the research and development of a therapy to treat those with a PI4KA mutation. Donate and join us on Cameron’s Crusade!
Riaan Research Initiative
Riaan Research Initiative is dedicated to funding intelligent and innovative scientific research to accelerate the development of viable treatments for Cockayne Syndrome.
Cure GABRB2 is dedicated to funding research for GABRB2, a rare neurological condition that causes seizures, movement disorders, and a range of disabilities.
Finding Hope for FRRS1L
Finding Hope for FRRS1L is dedicated to funding research for FRRS1L, a rare gene disorder that results from a mutation and resulting loss of function of the FRRS1L gene.
A fundraising campaign to raise money for research and development for a drug to treat Scarlett’s specific gene mutation, with hope of helping other children affected by GABRA1 and other GABA-A mutations.