News & Fundraising 

Hydrocephalus Awareness Week is taking place from Monday 4th March – Sunday 10th March 2024. Go to the Shine Charity Website for more details - 
If you are struggling financially to support your disabled child/ren or family member and you live in the United Kingdom, we have added some links to websites that offer free financial advice - please see our USEFUL LINKS page. 
Contact us below if you have a story about your child or family you would like to share. 
Marathons/10k/run/walk/cycle: Are you doing anything for OST this year? Let us know via email and we'll put it here... 
Find us on Facebook....  

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). 
Shared information 
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. 
Aims of Osteopetrosis Support TRust
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