In 1979 a contact group was started for parents of children who had Osteopetrosis. 

The mother of an affected child set the group up because she felt isolated and needed to speak to someone whose child had the same condition.  

In March 1991 a health visitor in Ipswich, who had an affected family on her caseload, together with some friend’s setup the osteopetrosis support group and applied to become a registered charity.  

In November 1992 the osteopetrosis contact group was incorporated into the Osteopetrosis support trust.  The aim of the group at this time was to supply information and support families of children suffering from the rare disease, Osteopetrosis.

Many thanks to all those who helped form and support this vital group.