Our Village

Because it really does take a village to save a rare child - you can help.​


Support Our Cause

The funds of Rare Village are as unique as the children who inspired them. Your dedicated contribution is applied solely to the fund you choose to support.​

Our Funds

Miren's Marathon

Miren’s Marathon is a fundraising campaign to raise money to research and develop a drug to treat Miren’s specific genetic mutation with the hope of helping other children affected by CACNA1A.  

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.

Batten Hope works to fund gene therapy for children fighting terminal Batten CLN7 disease. Currently, they are working to fund the final stages of dose development to get Gina’s son,  Joseph to treatment. 

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

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

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! 

Your Support Helps Save Lives.

Partnering with our organization allows you to make real changes for your child’s life. Broaden your reach and impact today.