Our Village

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

Will:USA

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.

In partnership with The Foundation for Batten Hope, your donation will support the families expenses while receiving gene therapy for terminal Batten CLN7 disease in 2021-2022.

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! 

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

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!

Cure ATRX

Cure ATRX is a fund supporting the research and development of a cure for those affected by ATRX. Donate today and help children like Benjamin who are affected by ATRX.

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. 

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.