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

Maurya Koduri Foundation


Miren’s Marathon


Cure ATP6


Sebastian’s Voice


Cure SPG4


Cameron’s Crusade






Finding Hope for FRRS1L


Scarlett’s Village


CSNK2B Foundation


For Henry


The KCNC1 Foundation




Baby Eleanor Foundation


Bubble Connection


Lukie’s Lighthouse


Estella’s Wish


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

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 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. 


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.

Scarlett's Village

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.

MAO Deficiency Foundation

A fundraising campaign to raise money to fund gene therapy as a cure for monoamine oxidase A and monoamine oxidase B (MAO A/B) deficiencies that affect children like Sam.

CSNK2B Foundation

The mission of CSNK2B Foundation is to bring awareness and education to POBINDS and to enrich the lives of those affected by accelerating research, treatments and by chasing a cure for CSNK2B.

Juju's CLN2 Warrior Foundation

Juju’s CLN2 Warrior Foundation mission objective is to fund research for the development of gene therapies for CLN2.

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.