Children with rare illnesses are often deemed medical mysteries and social outcast. Their health care expenses and daily necessities are very expensive; leaving families to exhaust their financial resources. There are no cures and 95% of the illnesses do not have an FDA approved treatment. It can take years to obtain a diagnosis and insurance companies typically deny claims citing they are medically unnecessary.
Each diagnosis is life changing. Each child’s future is uncertain. Families are faced with difficult decisions and need someone to help them navigate this journey. Rare Kids Network, a 501(c)(3) corporation, is the one comprehensive solution to provide complex care management services for this underserved patient population.
We reduce the burden on families so they can help their child heal physically, spiritually and emotionally. Because each child has unique circumstances, we create a diagnosis-based assistance plan. Next, we identify resources to ensure the child has appropriate outpatient support. If needed, we can also help parents understand how to advocate for their child to obtain needed services. 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!