Mission

We build community, support and empower medically complex individuals with rare diseases and syndromes, and their families, while also educating the public.

The Name

There are five major organs in the body, and all are vital to your life. All rare diseases or syndromes impact one of the vital organs and impede on everyday life. All the organs work in unison and so will we to make a big difference in the world.

Our Story

The Founders, Rome and Falesha Johnson were inspired to create Vital Five Foundation from their own experience of parenting a medically complex child with a rare disease. Their daughter Caliyah was diagnosed with Pfeiffer Syndrome at birth, and their journey as first-time parents was filled with many obstacles from day one. They could not have gotten by without their community and want to be the source of support for other families just like them. They know how it is, to feel alone, to continually advocate for your child, and need to lean on others for financial support.