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.

Communication Matters (CM) is a UK-wide charity committed to supporting people of all ages who find talking difficult because they have little or no clear speech. This can be via paper based communication supports or computer based voice output, we call this AAC (Augmentative and Alternative Communication). Communication can be compromised across many conditions such as Cerebral Palsy, Down Syndrome, Brain Injury, Learning Difficulties and Autism. We have an associate membership of around 400 people. Members come from across the UK and from all the various interests in AAC – personal experience, professional, commercial and research. Members receive copies of our Journal which is published 3 times a year, amongst other benefits. We hold a number of events: most notably our International AAC Conference held over 2.5 days at the University of Leeds each September, as well as UK-wide AAC Information Days (product demonstration days) and Study Days which focus on a particular topic of AAC. We also have many online resources and publications and an AAC Forum. If you are interested in finding out more, please do not hesitate to contact us.

Family Fund provides grants to families raising disabled and seriously ill children aged 17 and under. Our grants support a family, improve their well-being, increase quality of life and ease many of the pressures they often face. We are a registered charity and the UK’s largest provider of grants to families living on low incomes who are raising disabled or seriously ill children. Our grants bring practical and essential help that is often a lifeline to a family such as washing machines, fridges, bedding, specialist toys and much-need family breaks. With limited funding we try to help as many families as we can. We use our own eligibility criteria to ensure that we only help families in the most need.  We will consider helping a family once every 12 months and will usually look at a grant application 12 months from the date of the last grant. Depending on what a family have asked for, we will award a grant in a number of different ways. We work in partnership with a range of providers who help us to make our funding go further and help us to evidence that the grant awarded is used for the purpose it is […]

Enriching the lives of disabled young children, young people and their families. Creating opportunities to inspire disabled children and young people Since 2003, Grace House has supported local disabled children, young people and their families. Our services have provided vital support to these families and have served to enrich their lives

Life Science Centre is an amazing science centre in the heart of Newcastle upon Tyne where one ticket gets you everything, making for a great value day out! With hands-on exhibitions and a changing programme of activities throughout the year, there’s always something new to experience. Highlights include: Wow Zone. Get hands-on with thrilling and interactive exhibits. Explore how to bend beams of light, see yourself in an infrared camera, and operate the 6-metre-tall ‘Big Machine!’. The biggest planetarium in the north. Using Digistar 7 technology – Life’s planetarium system is the most advanced in the region, with state-of-the-art projectors to provide ultra-rich visuals and a truly immersive experience. Space Zone. Here you can explore inside a mock-up model of part of the International Space Station and watch shows on the Sphere, a digital globe displaying Earth, Moon and planetary satellite imagery. Making Studios. Where you can create, explore and tinker. Live theatre shows. Join our science explainers for amazing live science shows full of exciting demos. Experiment Zone. Grab a lab coat and do experiments using real tools and materials. Work on your own, in a team, or enlist the help of a friendly science explainer. Relaxed Sunday Sessions […]

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.

RSBC are here to support you and your family if you have a blind or partially sighted child aged 0-25. We offer 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 – Dorton College. Our Families First service has Family Practitioners based regionally across England and Wales and our Support Advisor is available by phone or email. Activities are held both in London and online. We also work with local partners to offer activities across England and Wales. Our Connecting Families Facebook group is available to join here where you can chat in a safe space with other parents and carers. We have a Family Practitioner dedicated to the North East region who can support the whole family through our Families First service. This support can be provided in-person or remotely.  From the moment you receive a diagnosis that your child has sight loss, if there is a change in vision, if your child or family are going through some changes that are difficult to manage or any other time when life just seems a bit tough, get in touch […]

For everyone living with complex disabilities. For everyone who is deafblind. Sense is here to help people communicate and experience the world. We believe that no one, no matter how complex their disabilities, should be isolated, left out, or unable to fulfil their potential. Our experts offer personalised support through our centres, holidays and short breaks, or in people’s own homes. We are here for everyone who needs us, for as long as they need us – providing early intervention for children, helping young people access education, and supporting the transition into adulthood and beyond. In addition to practical support, we also offer information to families, and campaign for the rights of people with complex disabilities to take part in life. We currently provide short breaks services in West Yorkshire for Children with additional needs. We are also providing a summer holiday club for 2 weeks in August.

The Children and Young Adult service at St Oswald’s is a 6/7 bedded unit currently offering short breaks to 61 children and young adults, aged 0 to 25 years from across the North East.The children and young adults accessing the service have life limiting/threatening conditions and complex health and social care needs. We also provide end of life care to children and young adults using our service and to other children/young adults when death is expected and imminent. These children maybe in-patients at the Great North Children’s Hospital or the Freeman Hospital. We offer an additional choice for a place to die which professionals can offer when planning end of life care. Occasionally we are requested to provide care to a child who has already died to support their family at this difficult time. The service tries to be as flexible as possible to meet the needs of the child or young adult and can respond imaginatively in response to, for example, a family crisis. A specialised team is required to deliver our service; The Children and Young Adult Service at St Oswald’s is nurse led. The Care Team is predominantly registered children’s nurses with a couple of adult registered […]

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 Eden Dora Trust for children with Encephalitis was formed specifically to offer support to children and their families affected by Encephalitis and childhood Acquired Brain Injuries through support, information, education and research. We support children in hospital with Encephalitis and families after hospital discharge, advice on re-integration to school, different forms of rehabilitation, along with working on an Acquired Brain Injury schools award and much much more including raising awareness and funding research into the causes, diagnoses & treatments of Encephalitis/A.B.I; We hold study days & fund training workshops for families, teachers and health care professionals involved with the ongoing care and rehabilitation of children affected by Acquired brain injury and this life changing illness. Helping children and their families feel less isolated, different, misunderstood and alone. The Eden Dora Trust works with the help of their extensive advisory panel and is the only charity in the UK dedicated solely to children who suffer from Encephalitis, that anyone can get, at any time. Our Mission SPEAK: Support – for those affected by Encephalitis to find out about what help is available and how they can access it. Provision – of funding to support further research into the causes, symptoms and potential cures for Encephalitis Education – funding essential training for those […]

We’re an independent charity offering a safety net for parents who have had a baby born prematurely or sick. We supply items, funds, staff specialists and support to the RVI Neonatal Unit in Newcastle-upon-Tyne, helping to make the Neonatal experience a little easier and more comfortable for parents, babies, siblings and family. We support families while on the neonatal unit and once discharged home.