News & Fundraising
Welcome to the Osteopetrosis Support Trust Website.
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 (OST) 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 affected by Malignant Infantile Osteopetrosis (MIOP) and is now a parent-run support group. This website was set up to provide support to children and their families affected by MIOP in the United Kingdom.
Although great care has been taken in the compilation and preparation of all entries to ensure accuracy, we cannot accept responsibility for any errors or omissions. Any medical information provided is for education/information purposes and is not designed to replace medical advice by a qualified medical professional.
Aims of the Osteopetrosis Support Trust
The aim of the Osteopetrosis Support Trust is to offer support to families of children with
Malignant Infantile Osteopetrosis (MIOP).
Raising awareness and diagnosis
Links to services or other charities that can help
Contact with other affected families where possible
Support after diagnosis or bereavement
Investment in genetic and scientific research
The charity can also offer small grants that can be applied for by completing a Grant Application Form which is available upon request below. Grant funding is only available to families within the United Kingdom.
Anyone can join the Osteopetrosis Support Trust, we welcome enquiries and new members. Any donations will always be greatly received and appreciated. Click link below to request donation details.