Organisations

brainstrust is a brain tumour charity that focuses on support and wellbeing. Little brainstrust is designed for children and teenagers living with a brain tumour diagnosis. Our support specialist for children and families is based in Sussex however has a national role. 500 children a year are diagnosed with a brain tumour, and there are thousands of families living with a brain tumour. Two thirds of children diagnosed with a brain tumour are left with a disability. Families can find communication difficult, and awareness of brain tumours in children is low; this is even though brain tumours now kill more children than any other illness in the UK. We are actively trying to grow clinical links with hospitals and other charities locally and nationally, so that we can collectively work together to provide optimum care to our young patients. Families facing a brain tumour diagnosis of a child feel scared, confused and alone. We know. That’s why we’re working to support families by: Providing unique, honest, coaching-led support by phone (24/7) or email, helping families overcome challenges and find the best possible outcome for their child, and their family Helping families feel less alone by creating communities of peer support, […]

We bring disabled people and family members/carers together on line to share experiences and learn together. We offer a wide range of workshops and sessions led by people with lived experience including well being and coping with anxiety, Direct Payments, Advocacy, Social Care and Health. We give disabled people and families the opportunity to amplify their voices and a platform to have honest and well facilitated conversations.

Cerebra is a charity supporting families with children 16 and under with brain conditions. We currently fund research throughout the country into various aspects such as behaviour, sleep, premature births and legal issues. We have a sleep service where our sleep practitioner can provide sleep workshops and presentations and also do 1:1 work with families and create a personalised sleep plan. Our regional officers are able to provide information and advice on all sorts of different things, such as looking for specialist equipment (e.g. trikes/car seats) to where to look for funding  to help pay for these. I also signpost a lot to relevant organisations/charities and can help with form filling (grants/DLA). We have a lending library where we loan out books for families (for free) these include books on conditions, sleep, sensory, mindfulness, diet, health and wellbeing etc. We also loan out sensory toys, including a couple of weighted blankets. We have a holiday home families can stay in, and have a grants/wills and trusts voucher scheme (however both of these are full/closed at the minute!) We have a free stress helpline families can call, and we publish various parent guides (including DLA guide, anxiety guide, challenging behaviour factsheet, […]

Changing Faces is the UK’s leading charity for everyone with a mark, scar or condition on their face or body that makes them look different. We offer free emotional, social and counselling support for people who have a visible difference which affects their mental or emotional wellbeing. This include a support and information line, one-to-one social and emotional support sessions, an online community forum, peer support group sessions (18yrs +), and online workshops for children, young people and parents, and a skin camouflage service.  Our skin camouflage service is available at locations across England & Scotland. Our free wellbeing services are all delivered via telephone, video session or online, meaning they can be accessed across the UK, wherever you live. On our website you will also find self-help guides and resources for schools.

The Children’s Air Ambulance is an inter-hospital transfer service flying babies and children from one hospital to another for specialist care.

Supporting babies, children and adults living with congenital heart disease. We work in the healthcare sphere, serving patients and supporting staff living and working in the world of congenital heart disease. We have family support worker who signs posts for families, depending on their needs. We also run the fundraising side of what we do, which leads onto supporting meaningful projects that support the NHS specifically for Babies, Children and Adults living with congenital heart disease.

Contact a Family is a National Charity supporting families of children with disabilities throughout their journey, from birth – 25 years. We are an information, guidance and advice charity offering help and support across a wide range of issues that families encounter from Health, Education, Finances and Benefits, Family issues, equipment, grants, legal aspects etc. Our team of specialist trained experts that staff our help desk supporting families with queries at times of need ; and  we also have parent advisors that work in the regions supporting families with workshops, events, support groups etc.

Define Fine has been created by a small, committed team of parents and professionals who have lived experience of school attendance difficulties. We are a parent/carer-led organisation set up in response to the growing number of children and young people who experience school attendance difficulties. This is sometimes referred to as ‘school refusal’, or emotionally based school avoidance and may be due to unmet Special Educational Needs & Disabilities including physical or mental illness, either suspected or diagnosed, bullying or issues relating to academic pressure, or even the school environment. We provide peer support, using our tried and tested resources and to help parents advocate for the support their children and young people need to be able to learn and achieve. We hope to build up our growing network of peer supporters, who we can train to use our guides for their own family and ultimately to then help other families experiencing attendance difficulties. Empowering parents to be able to effectively work with professionals, should encourage not only earlier intervention, with much better outcomes, but also reduce the risk and impact of unhelpful, and unnecessary attendance prosecutions and social services  safeguarding interventions. It is vital that children, young people and […]

We are Guide Dogs, and we’re here to help people with sight loss live the life they choose. Beyond guide Dogs we offer a range of services which include: Habilitation (independent mobility and life skills training for children and young people with vision impairments) Family support advice, Education advices, Custom eyes books, Buddy dogs, family events and My Time to Play groups for young children aged 0-4. Downloadable forms My Life Skills My Time To Play CustomEyes Books Family Events Finding your way Sensory grants  

A small user-led charity which makes life better for children with hydrocephalus (known as water on the brain) and the families who love and care for them. We deliver : Awareness: Every year 1 in 770 babies will be diagnosed with hydrocephalus, yet there is little awareness of the condition and its impact. We are working to change this through targeted awareness raising. Support: We direct families affected by hydrocephalus to organisations that can offer help. We also provide peer-to-peer support, so families feel less alone and can meet others from within their community who are going through the same. Campaigns Through our ‘Get-A-Head’ campaign, we speak up for better awareness of infant head circumference measurement as a tool for early diagnosis of hydrocephalus. Research and training We support research and fund training. This improves understanding of the condition and its management amongst front-line health care professionals, which improves patient care.

North East Action for Children Parents and Inclusion (NAPI) recognises that the needs of children and their families are diverse and individual. NAPI provides and promotes services and support to children and families, local communities, volunteers and organisations. NAPI empowers the social, educational and health needs of all those involved.

Founded in 1980 by a group of parents who came together to establish Thornhill Park School in Sunderland, the North East Autism Society grew out of a desire to provide a better standard of education for autistic children. Having remortgaged their homes to purchase the building, our founders were dedicated to helping autistic young people fulfil their potential – and that commitment remains at the heart of everything we do. Our services include education for children aged 3-19, post-16 education and social/vocational training along with supported and open employment opportunities for adults. Within our care services, we provide year-round residential placements and supported living services. We also work directly with parents and carers, offering family support which includes short breaks, support in the home, evening and weekend activities.

We are a voluntary group of Northumberland parents and carers of children and young people (0 – 25) who have special educational needs and/or disabilities. We work in partnership with service commissioners and providers, sharing knowledge and experience, with the aim of supporting and enabling families within our community to access the services and give them a voice in developing the quality, range, and accessibility of this provision.

Ohana provides relief for families who have children with a disability or special educational need. Ohana strives to provide and or advise where they can find inclusive support activities, which help develop communication and social skills. Offer opportunities to volunteer, refer or advise on where to go for respite care. Increased awareness and understanding of the support needs of people with disabilities and/or special educational needs.

PEEPS HIE are a small UK based national charity (Reg 1179495). We support anyone within the UK affected by a Hypoxic Ischaemic Encephalopathy event (H.I.E event) – lack of oxygen to the brain, normally at birth but can occur in older children, regardless of or cause or outcome. We offer free emotional, practical and financial support to anyone affected by H.I.E in the form of counselling, peer support, parent packs, equipment funds and various other means as listed on our website. We offer opportunities for families to meet together in their PEEPS together events, which offers support and the ability to share experiences with other H.I.E families. You can also get in touch with us on Facebook, Instagram, X and LinkedIn). In addition there is a closed H.I.E family WhatsApp group

We are the leading organisation providing emotional and practical support to families who have a child with a life threatening or terminal illness.

Supporting anyone affected by Spina Bifida, hydrocephalus and related conditions in England, Wales and Northern Ireland.

Skills for People is a charity which has been supporting disabled people and their families since 1983. The Family Advice and Support Team provides support for parents and carers in Newcastle upon Tyne who have children and young people up to the age of 25, who have Special Educational Needs and Disabilities. The team gives information and advice on a range of issues and can also work with a family to provide more in depth support if needed. We have a regular newsletter, hold coffee mornings across the city and have a closed facebook page for parents called Pass it on Parents Newcastle. We can help with funding applications and can provide training such as Positive Behaviour Workshops for parents to understand and support their child where behaviours are a concern. We work with partners in education, health and social care as well as other voluntary organisations.

SWAN UK is the only dedicated support network for families of children with undiagnosed genetic conditions. Approximately 6,000 children are born in the UK each year with a syndrome without a name – a genetic condition so rare that it is often impossible to diagnose. Without a diagnosis it can be difficult to access basic information and support. We have information leaflets below which are available to download. We are developing leaflets in further languages and these will also be available to download once they are completed. If you can’t find the answer to your question in the resources below or would like to make an enquiry please email: info@undiagnosed.org.uk. Our animation called ‘Ellie’s story’ explains what it means to have an undiagnosed genetic condition and how SWAN UK helps. Click the link to find out more: bit.ly/elliesstory We offer 24/7 information and support through our online forums for registered members. If you would like to become a SWAN UK member please email: joinus@undiagnosed.org.uk or click here to find out more. Don’t forget to check out our news section and join our mailing list too.

The Children’s Trust is the UK’s leading charity for children with brain injury and neurodisability. We deliver rehabilitation, education and community services through skilled teams who work with children and young people aged 0-18, and their families.   The Children’s Trust Brain Injury Community Service provides specialist goal-orientated neurorehabilitation delivered in the child’s environment, either at home, in school, or a combination of both settings. Delivered by specialists from a range of clinical backgrounds, we work with the child and their family in a non-intensive, consultative way focusing on the needs which result from an acquired brain injury. These may be social, emotional, cognitive, communicative, and behavioural needs. Our ultimate goal is to maximise the child/young person’s participation in their everyday life.   In partnership with Leeds Children’s Hospital, we have a clinical specialist based in the hospital who provides information, education, advice and support to families and other professionals. In addition, we also provide long-term support to the child and their family at key transition stages such as starting school, moving to secondary school or college, starting a new job or leaving home to live independently for the first time.   In addition, The Children’s Trust Brain Injury Hub […]

Parent led support for families of children with additional needs, disabilities and life limiting conditions with support groups, accessible & inclusive events, training and our bespoke Roaring Rainforest sensory room & garden. A place to feel at home.

The Toby Henderson Trust (TTHT) is an independently funded charity supporting autistic children, young people and adults, their families and carers in the North East of England. We provide relevant, appropriate and accessible support for autistic young people from two years into adulthood, whilst also empowering parents, families and carers by sharing knowledge, experience and understanding.  We acknowledge that yours or your child’s situation is unique and we encourage you to contact us to discuss how we can offer individual support.