About Us
Founded by two rare disease moms who saw the potential for a better way, the Rare Village is focused on serving rare families in their most important journey – that of their rare disease child.
We are Rare.
Our sons Will and Joseph have a lot in common. They both love a good laugh, they adore their little sisters, and they inspire smiles whenever they enter a room. However, they also struggle with the challenges of facing and fighting a rare and terminal pediatric neurodegenerative disease. Will has Surf1 syndrome, and Joseph has Batten disease. Despite the odds, Will and Joseph are making big changes in the world. Their journeys have inspired our commitment to change the world of rare childhood disease for the better.
We founded the Rare Village Foundation because as parents we know first-hand the struggles of rare disease life, as well as the power of hope, community, and hard work. We want every rare parent or family confronted with a terminal diagnosis to know that they are not alone.
We Know Rare.
We have established non-profit foundations in pursuit of gene therapy treatments to save our sons, and future children facing the same diseases. As a result, we have learned about the process of working toward a clinical trial in partnership with foundations, institutions, and manufacturers. We would like to share that knowledge, as well as our journey, with any rare family that may benefit.
Our Values
Family
We believe that great strides in rare disease treatments start with families driven by love. Our goal is to empower families as treatment advocates by providing education, connections and tools to help them simplify their rare disease treatment work.
Communication
Rare disease science, technology and support resources evolve daily, and so do the possibilities for rare disease treatments and lifestyles. We work to connect our village to information that could assist them in achieving their goals as a rare disease community.
Brevity
Days matter for rare disease children - we know that a rare disease diagnosis is a race against the clock. Anything that we can do to streamline the process to applied research makes a huge impact on the quality of family life, and the life of a child.
We Care about Rare.
We have been there- we have raised the funds, found the scientists, watched our children lose abilities and life. We know this journey in its pain and beauty, and we know that rare families TRUST rare families.