The Osteopetrosis Support Trust - Charities & Supportive Organisations

RNIB Early Years – Royal National Institute for the Blind, support in the UK.

Shine Charity – a society that meets the needs, values the contribution and celebrates the lives of people living with spina bifida and hydrocephalus

James Hopkins Trust (Gloucestershire) - provides practical help for severely disabled, life threatened and life limited young children with nursing needs, aged 5 years and under, living in Gloucestershire.

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.

Blind Children UK – supporting children with sight loss and their families

SENSE – An organization supporting children with sight and hearing loss

Scientific Research

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

Genetic Alliance UK - raises awareness of genetic conditions and improves the quality of services and information available to patients and families.

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.

NHS Bone Marrow Donation

NHS Give and Let Live

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.

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