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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.

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 […]

Talkin Tarn is a new community group set up in Barnsley to support SEND parents and carers. Our aim is to have therapy drop in days, workshops and regular weekly meet ups aka tea, biscuits and a chat to support SEND parents and carers. Our weekly meet ups are on Monday’s from 10am – 11:30am at the Priory Campus in Barnsley Carers Society (Making Space) community room

Sense Specialist Services for Children & Young People is a team of specialist teachers of multisensory impairment (QTMSI) and MSI practitioners. We have a wide range of skills and experience working with children and young people who are deafblind/ multi-sensory impaired. The team supports: Children and young people who are deafblind/multi-sensory impaired Children and young people who have medical conditions that are likely to cause problems with sight and hearing as they grow older – for example Usher syndrome. We also offer some support to children (and their families) who have either a hearing or vision impairment, and additional needs, which impact on their access to information, communication and mobility. Sense Services 1.Early Intervention and Play Service (EIPS): We want families to see a more positive future, and for siblings to have more chances to have fun and share experiences with their peers. This new service will be led by a team of skilled early years practitioners. We will deliver a programme of early intervention and developmental play sessions, giving families the chance to understand their child’s unique needs and abilities, develop new strategies to communicate with their child and to grow in confidence in navigating their child’s health, wellbeing, […]

Supporting adults and children with learning disabilities and/or autism and their families. We deliver day services, evening and weekend provision to adults and Kids services Thursday and Friday evenings and all day Saturday. We also run a health service supporting adults to attend Annual Health Checks in their GP practices.In addition we also consult with our members and support other organisations to engage and consult with members and their families on wider Sheffield service provision.

Free funding information and support to community/voluntary groups across the South Yorkshire area. Weekly email bulletin of Funding News; searchable database of funders; information resources covering wide variety of funding topics; training programme around fundraising and funding topics. Sheffield & Barnsley areas benefit from one-to-one support via dedicated Development Worker.

Barnsley Youth Voice and Participation team have 3 youth voice forums, Barnsley SEND Youth forum is a platform for young people aged 11-25 who experience SEND. Members of the SEND Youth forum regularly meet with their peers and consult wider in educational settings to make sure SEND youth voice is represented and that the views/ideas of SEND young people are considered when key decision makers are implementing and designing services. Barnsley Youth Council is a platform where young people can get involved in youth voice activities and influence change, Care4us Council is a youth voice forum for looked after and/or care experienced young people.

Grimm & Co is a registered charity and our core purpose is to change lives one story at a time, using creative writing as a vehicle to help families build sociocultural literacies. We support under-resourced children and young people aged 0 to 18 with their confidence and skills around self-expression, creativity and writing.

A registered charity run by and for families of children and young people (aged 0-25) who have Special Educational Needs and/or Disabilities (SEND). We work in partnership with service commissioners and providers, sharing knowledge and experience of families to help plan and develop the quality, range and accessibility of provision, creating better outcomes for families through participation and co-production.

Chilypep is a young people’s empowerment project, dedicated to raising the voices of young people and giving them the confidence, influence and platform to shape their world and stay connected. We work with young people in Sheffield, Barnsley, South Yorkshire and beyond.

Based on commitments made in the NHS Long Term Plan, the SYB ICS Children & Young People’s Alliance seeks to improve outcomes and reduce health inequalities for all those aged 0 -25 by delivering the national Children and Young People’s Transformation Programme.

We are an educational support service for visually impaired children and young people from 0-25. Our team consists of qualified specialist teachers, specialist teaching assistants, habilitaton officers and curriculum support staff. Our focus is to ensure the best outcomes for children and young people with a vision impairment. We aim to provide ongoing support to enable each young person to reach their potential, and develop skills to become independent adults who are included in all aspects of their community. We aim to ensure support is given to families, and work with educational settings to ensure that all children and young people have access to, and are fully included in all aspects of curriculum.

Charity providing ‘help, hope, inspiration & friendship’ for children, young people and beyond with Cerebral Palsy/physical disabilities. The main aims of CP Teens UK are: ​The promotion of social inclusion among young people with physical disabilities who are socially excluded from society, or parts of society, as a result of their disability by: Providing connections & friendships for young people with a range of physical disabilities as part of a monitored and supportive community Providing help, support & advice for young people with physical disabilities, and their families Providing workshops, forums, advocacy and general support Providing recreational facilities and opportunities for young people with physical disabilities   Registered Charity No. 1172105.

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, […]

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

Educational Psychologists work mainly with schools and places where children are educated. We help to find solutions to worries and concerns people might have about how children are developing, progressing or learning. We often work with children who are the most vulnerable and have the greatest complexity of needs. Mainly a specialist service but timely intervention can sometimes prevent issues becoming more complex. The Service consists of a team of Educational Psychologists and an admin team. There are 22 psychologists, some working part time and others full time. This is the equivalent of Just over 18 full time posts for the whole of the city. The Service is currently managed by two Principal Educational Psychologists, supported by three Senior Educational Psychologists. The service has a specialist senior Educational Psychologists for Social Emotional and Mental Health Needs All Educational Psychologists are qualified practitioners, and registered with the HCPC (Health & Care Professions Council) Most practicing psychologists are also members of the Association of Educational Psychologists, and/or the British Psychological Service

Changing Faces is the UK’s leading charity for everyone with a mark, scar or condition anywhere on their body that makes them look different. We offer confidential, one-to-one social, emotional and psychological counselling and support sessions, as well as a support and information line, peer group chats, an online community forum, online workshops for children, young people and families and a skin camouflage service.

Our Nurses support families, our researchers work to improve children’s health, our dedicated team campaign for a fairer deal and our volunteers and supporters know that 100% of every penny they donate or fundraise will be used for equipment to change a child’s life. Childhood cancers, birth defects, accidents, diseases and infections can all cause our precious babies, children, and young people to face lifelong challenges. It happens to dozens of children and their families every day. Newlife exists because if it was your child, you would want the best for them and that’s what we are working for every day. There are now around one million disabled and terminally ill children in the UK. Thousands of them rely on Newlife to get the equipment they need, equipment that has often been refused by the statutory services or the delays in provision mean that the child will suffer unnecessarily. Newlife runs the only fast track equipment services in the UK helping those children in urgent need.  

Sheffield Special Educational Needs & Disabilities Information, Advice and Support (SSENDIAS) are a statutory service offering free impartial, confidential, information advice and support to: Children and young people (0-25 years old) with Special Educational Needs and Disabilities (SEND) and their parent carers on education and related health and social care matters.

Sheffield Volunteering, as part of the University of Sheffield Students’ Union, encourages and enables University of Sheffield students to engage with local communities. We work closely with local voluntary, charitable and social organisations in Sheffield and South Yorkshire to increase the involvement of student volunteers in the city and region, and strengthen their connection with communities. If you are a local charitable organisation and would like to recruit student volunteers, please get in touch. We can help you to promote regular volunteering opportunities or one-off activities. We also have student-led projects (including sports and educational) who deliver outreach activities in schools and community groups. Get in touch if this is something you would be interested in.

University Student’s Union volunteering department, that acts as a broker to match Sheffield Hallam University’s roughly 30,000 students with volunteering opportunities in the area.

The Sheffield Association for Spina Bifida and Hydrocephalus (SHASBaH) is a local registered charity helping those affected by Spina Bifida, Hydrocephalus and other related conditions.

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 […]

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.

The Children’s Sleep Charity are a national, award-winning charity supporting children with sleep issues. We provide support for families and accredited training for professionals and commercial organisations. Sleep deprivation can have a serious impacton emotional, physical and mental health, many families seeking our support are approaching crisis point. We offer a range of services from working directly with parents to training professionals in the NHS. Our work is based on the latest research and we have a team of experts who input into our training materials and courses. We believe in working in partnership with families and offer a gentle approach to making lasting changes to your child’s sleep patterns.

Paces is a small specialist school for children living with Cerebral Palsy and other neurological disorders. We are situated in the North of Sheffield and provide education for children from Sheffield and other neighbouring authorities. Paces is a non-maintained special school that delivers the National Curriculum through the framework of Conductive Education.

Irwin Mitchell is proud to be a member of SY CANN. If your child lives with a disability or has suffered from a serious injury or illness, the emotional and physical impact can be life-changing. We understand how concerned you may be about the level of care and support your child has had or is currently receiving and can offer help and legal advice. We believe that all families should have access to legal support and we are able to offer guidance on the following: Disability and Educational Rights Education, Health and Care Plans Medical Law and Negligence Protecting Your Child’s Future including wills and trusts Court of Protection Personal Injury Trusts Anna has 20 years of experience specialising in medical negligence claims and helping families through the process. She has worked with families on a significant number of complex cases, including birth injury, brain injury, cerebral palsy cases and amputation cases. Contacting a lawyer may feel daunting but if you want to find out more about your options, please do get in touch for a free initial chat. If you wish to take forward a legal case we will always explore funding options available to you and your family.

Sheffield Parent Carer Forum is an independent local charity run by and for parents of children and young people with special educational needs and disabilities. We connect almost 2,000 families from across Sheffield to provide mutual support, share information and influence policy and practice. We support families by: Providing an information and signposting service Organising information events and training sessions for parents Organising social events where families can meet each other Gathering parents’ views and representing them at strategic meetings Providing training to raise awareness of the issues faced by our families It’s free to join – you can join via our website (www.sheffieldparentcarerforum.org.uk/become-a-member/) or call us on 0300 321 4721 to request a membership form.

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

Caudwell Children is a registered charity that provides emotional and practical support to disabled children and their families. Our Services Include: Autism Service – ASD Assessments, OT Sensory Pathway Assessments, Workshops for parents and children aged 4 -11 years. Family Support – Families with support, signposting and information at the point of diagnosis or during treatment. Equipment – Funding towards Mobility, sensory and specialist sports equipment. Treatment – Funding towards vital treatments that can dramatically change or save a child’s life. Therapy – Access to therapy programmes for children with cerebral palsy, brain injuries and other associated conditions Supported Breaks – Teaching practical life skills through activity programmes, family trips and accredited courses. Caudwell International Children’s Centre (CICC).

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 […]

Fable, is a national epilepsy charity who help support, advice and assist patients, carers and family members affected by Epilepsy in many ways.  We run a Freephone advice line, along with a number of local support groups, one to one advise sessions, a buddy scheme and a national patient support network.  We also fund pieces of medical equipment which can enhance patients quality of life along with endeavouring to grant patient’s wishes and dreams.   Fable work hard to be a lifeline to some, an understanding ear to many and an open door to all.