The Osteopetrosis Suport Trust -  News & Fundraising 

January 2017: Osteopetrosis Annual General Meeting to be held on Wednesday, 18 January at 7.30pm in Bristol - please contact via email for further information and an Agenda. 
January 2017: Woodspring Golf Club, Bristol spent last year supporting the Osteopetrosis Support Trust by hosting charity golf days and auctions. 
Marathons/10k/run/walk/cycle: Are you doing anything for OST this year? Let us know via email and we'll put it here... 

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 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. 
 

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 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. 
 

News & Fundraising 

2016: Sarah Sullivan will be running the Great Bristol 10k for the Osteopetrosis Support Trust on Sunday, 15 May 2016 (justgiving link will follow soon) 
May 2015: After 2 bone marrow transplants in 5 years to cure Osteopetrosis, Imogen is finally 100% donor cells and well on her way to recovery. 
2015: Alex had a bone marrow transplant when he was a baby which cured his Osteopetrosis. He is now 22, he spent a year travelling and working in Australia and New Zealand and is now working full time in landscaping. He enjoys playing and listening to music and snow boarding. 

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. 
 
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 the form on the website but is only available to families within the UK. 
 
Anyone can join the trust and donations are gratefully received. 
Aims of Osteopetrosis Support TRust