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
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.
Guide Dogs UK - Experts can help you find ways to live actively, independently and well with sight loss. From getting around safely to dog care and welfare, and family support to opening up the world with technology.
Home adaptations - If your home needs to be adapted to meet your child’s needs, you may be able to get a Disabled Facilities Grant to help with the costs. Usually, an Occupational Therapist will talk to you to work out what adaptations would be best for your child.
Family Fund - If you’re raising a disabled or seriously ill child, the Family Fund may be able to offer support via a grant.
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
Action Medical Research for Children - UK-wide charity saving and changing children’s lives through medical research. For more than 65 years we’ve helped pioneer ways to prevent disease and develop treatments benefiting millions of people. Our mission is to advance translation of early science into health care treatments or diagnostics that can be taken through to full development and made available to patients.
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.
Royal Society for Blind Children - offers a range of services including emotional support and practical advice for families, opportunities for children and young people to build confidence and skills through activities, and a specialist further education college.
Carers Allowance - claim Carers Allowance whilst caring for someone who is disabled. You could get £67.60 a week if you care for someone for at least 35 hours a week.
Disability Living Allowance - Disability Living Allowance (DLA) for children may help with the extra costs of looking after a child who is under 16 and has difficulties walking or needs much more looking after than a child of the same age who does not have a disability.
Rare Disease UK and Genetic Alliance UK - work on a variety of issues that families and individuals with genetic conditions face. We aim to provide information, support families and influence the services needed by these patients. We also work to add patient voice into debates that matter to our community. Our work falls into different categories: reproductive techniques, diagnosis, medical research, healthcare and delivery, access to treatments and living and education.
Sources of Financial Advice Online - Any financial information provided is for information purposes and is not designed to replace financial advice by a qualified professional.
UK Government Website - providing financial advice to families with disabled children or adults
Citizens Advice - help with benefit claims for people who are sick or disabled
Money Buddies - based in Leeds, offering free financial advice and planning
National Debtline - online site offering free advice to manage money and debt
Disability Rights UK - website offering advice for disabled people living in the UK
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.