Osteopetrosis Support Trust -  News & Fundraising 

20 January 2020 we held our first 'virtual' Annual General Meeting - minutes on 'Family Stories' page. 
Thank you Tracey for being Chair, welcome Wendy for becoming the new Chair of OST. 
Willow - a huge thank you to Willow's family for all their generous donations and fundraising during 2018-2019. 
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 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. 
 

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
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