Rare Village Foundation

About

We know the challenges of rare disease life, because we live it every day. A child’s rare disease diagnosis can be both overwhelming and heartbreaking – but there is hope, and you are not alone. As rare disease parents we are here to help you as you navigate your rare disease journey toward a cure. We know it is challenging, and that time is of the essence. Our goal at Rare Village is to give you resources to help navigate the process. We hope that you will join our little village as we help to connect, collaborate and create the change needed to deliver hope and a future to children of rare childhood disease.