The Osteopetrosis Support Trust was first formed in 1979. A mother of an affected child set up a contact group because she felt isolated. In March 1991 a Health Visitor in Ipswich had an affected family on her caseload and together with some friends set up the Osteopetrosis Support Group and applied to become a registered charity.
In 1991, the Osteopetrosis contact group was incorporated into the Osteopetrosis Support Trust and the charity was formed. Registered Charity in England and Wales No.1013052.In 2001 the trust was handed over to the parents of children with Osteopetrosis and is now a parent-run support group supported by medical and scientific advisers with information available for families and professionals.