Rare Facts: 80% of rare diseases are genetic, and therefore are present throughout
the child’s entire life, even if symptoms do not immediately appear.

About Us

Children with rare illnesses are often deemed medical mysteries.  They have complex needs to accomplish the most basic daily tasks such as breathing, walking, learning, and eating.   Rare Kids Network, a 501(c)(3) corporation, was formed to provide outpatient support for children and families impacted by rare illness. We want to diminish the physical and emotional challenges encountered at each stage of the medical journey.

Rare illnesses are life changing.   Each child’s future is uncertain.

Because the children have unique circumstances, we create a diagnosis-based assistance plan.  Next, we identify and help secure resources to ensure the child achieves the best quality of life.  If needed, we can also help parents advocate for their child.   And, if desired, we are happy to provide an introduction to a faith community as we feel faith is an integral part of healing.

Newly diagnosed, undiagnosed or many years after diagnosis — Rare Kids Network is here to help so children with rare illnesses can focus less on being a patient and more on achieving their life dreams!