The Osteopetrosis Support Trust - Charities & Supportive Organisations
Shine Charity – a society that meets the needs, values the contribution and celebrates the lives of people living with spina bifida and hydrocephalus
Springboard Opportunity Group (South West) – providing support for children with additional needs from birth to 5 years in the South West area. Drop-in sessions at centres in Weston-Super-Mare and Clevedon.
Above and Beyond – raises funds to improve the hospital environment, fund ground breaking research, support the development and training of hospital staff and provide state-of-the-art equipment in the following hospitals: Bristol Royal Infirmary, Bristol Haematology & Oncology Centre, Bristol Heart Institute, St Michaels Hospital, Bristol Royal Hospital for Children, Bristol Eye Hospital, Bristol Dental Hospital, South Bristol Community Hospital
Bone Marrow Donation Services
Anthony Nolan - Match incredible individuals willing to donate their blood stem cells or bone marrow to people who desperately need lifesaving transplants. They educate young people about the lifesaving difference they can make by joining their register. They conduct groundbreaking research to improve the success rates of transplants and improve the lives of all people with blood cancer and provide support, advice and information for people with blood cancer and their families.
If you or your family know of any other resources or contacts that might be useful to children with Infantile Malignant Osteopetrosis and their families, please let us know, we would be happy to add the link to our website.