Soft Bones, Inc. Information

We are a patient advocacy group for a rare disease called hypophosphatasia or HPP. HPP is an inborn, genetically-inherited, error of metabolism that causes a mutation in the TNSALP or TNAP gene, causing a low level of alkaline phosphatase or ALP. HPP has a broad spectrum of severity and typically the younger a patient shows symptoms, the more serious the disease. Our organization supports patients, clinicians and researchers to stimulate research, provide patient insights, gather best practices to ultimately improve the lives of families living with this metabolic bone disease. We partner with other organizations to fulfill our mission. Our vision is a world free of HPP and our goal is to put ourselves out of business.