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ACE’s mission as a registered charity is to promote fairness and opportunity in education.
We work to:
- Empower parents and carers
- Encourage changes in education law and policy
- Promote good practice in the education system
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Information and advice about play and leisure for disabled children and young adults
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Welcome to ADDISS, The National Attention Deficit Disorder Information and Support Service.
We provide people-friendly information and resources about Attention Deficit Hyperactivity Disorder to anyone who needs assistance - parents, sufferers, teachers or health professionals. Whatever you're looking for in ADHD, we'll do our best to help.
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- Helping children - Afasic Cymru represents children with speech and language and communication impairments on a number of working party groups at the Wales Assembly Government and at local level.
- Services and training - We are committed to helping our children and young people to access services at every opportunity. We also aim to raise awareness of the needs of our children by offering training opportunities and bilingual literature specific to Wales.
We are committed to working towards bilingualism and Wales specific issues.
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Arthritis can affect anyone at any age – an estimated 600 children in Wales have arthritis and the self-reported rate of arthritis amongst adults in Wales has been estimated as high as 25 per cent. Arthritis can impact on every aspect of a person’s life – Arthritis Care in Wales is here to make a difference
We provide information and empowerment training for people with arthritis through our publications, information points and self-management courses. We also campaign for improved services and have branches throughout Wales that provide social support.
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ASBAH is the leading UK registered charity providing information and advice about spina bifida and hydrocephalus to individuals, families and carers. Our unique services are targeted towards: - support to parents before and around the birth of their baby, or diagnosis of the disability
- support to the child and family on educational matters
- specialised information and help on health matters
- helping young people access services to progress towards control of their lives
- responding to the needs of adults with spina bifida and/or hydrocephalus
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0845 450 7755 (National Helpline) 01248 671345 (Wales) |
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elini@asbah.org |
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ASSERT is a United Kingdom based support group. We are all volunteers who have direct contact with people with Angelman Syndrome. The majority of the
trustee's are parents or relatives of children or adults with Angelman Syndrome.
ASSERT can help in many ways. If you are a parent we can offer advice and support on a wide range of problems you will face. If you are a carer or professional
we can offer information and experiences based on real life caring.
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We aim to support all people affected by ataxia; people with the condition, their families, carers, friends and colleagues. We fund research into developing safe, effective treatments. Our ultimate goal is to find a cure for ataxias. We help people live with ataxia in the meantime by providing a range of services that are not available anywhere else.
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The A-T Society was established in 1989 and is committed to helping, supporting and advising families affected by A-T particularly at the very difficult time of diagnosis.
The objective of the Society is to alleviate the distress and suffering that A-T causes by working to improve quality of life now and in the future.
We do this through:
- Funding research
- Supporting families
- Working to improve clinical management
- Raising awareness
- Research
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Disability Equality Training, Planning and Consultancy for Arts and Voluntary organisations
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The Bobath approach to the management of children with cerebral palsy was pioneered and developed by Dr Karel and Mrs Berta Bobath. Begun in the 1940's the Bobath Concept is now well known and accepted in many countries as one of the leading approaches.
The main aim of treatment is to encourage and increase the child's ability to move and function in as normal a way as possible. More normal movements cannot be obtained if the child stays in a few positions and moves in a limited or disordered way. The aim of management is to help the child to change his abnormal postures and movements so that he or she is able to comfortably adapt to the environment and develop a better quality of functional skills
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The BDA is the voice of dyslexic people. We aim to influence government and other institutions to promote a dyslexia friendly society.
The BDA promotes early identification and support in schools to ensure opportunity to learn for dyslexic learners. We want to represent the needs of dyslexic people on leaving school, in higher education and in work.
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Our vision
- To live in a society where everyone understands epilepsy and where attitudes towards the condition are based on fact not fiction.
Our mission
- To take action to meet the identified needs and aspirations of all people with epilepsy and those with an interest in the condition.
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The Fellowship
The British Polio Fellowship (BPF) is a registered charity with around 9000 members. We were one of the first organisations of disabled people and have acted as a voice for people who have had polio for over half a century. We are democratically-run and governed by our Management Council, the majority of whom are people who have had polio themselves.
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What is the Brittle Bone Society? Founded in Dundee in 1968 the Brittle Bone Society is the only UK wide organisation providing support to people affected by the rare bone condition Osteogenesis Imperfecta (OI).
We offer help, support and advice to anyone affected by OI, including family, carers, social workers and other professionals.
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website currently being constructed
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In 1989, a group of senior professionals at the Atkinson Morley's Hospital set up the Child Brain Injury Trust in order to provide more knowledge regarding the effects of injury on the developing brain
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The Foundation is the UK's leading charity relating to children's growth...
- Support and encourage all persons (either children or adults) who have growth disorders, and their families, in any manner which is charitable in accordance with the law of the United Kingdom.
- Promote and fund research into the causes and cure of growth disorders in children within the area of benefit and to publish the results of such research
- Educate the public in general and workers in the medical profession in particular, in the problems and difficulties encountered by those with growth disorders.
- Encourage the regular monitoring of growth and development criteria by medical professionals, at all levels, and facilitate such monitoring by identifying and making available on loan or for purchase equipment suitable for the purpose.
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The Childhood Eye Cancer Trust (CHECT) is a UK wide charity for families and individuals affected by retinoblastoma. We offer support and information, fund research and raise public awareness of this rare cancer.
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The Children`s Heart Federation is dedicated to helping children with congenital or acquired heart disease and their families in the UK and Ireland. We are a parent-led charity consisting of 21 organisations, all of which are registered charities whose main aim is the support of families of children with heart conditions. Our vision is of a society in which all children with congenital heart disease have both their medical and social needs met so that they can live life to the full.
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The support team at CLDF provides practical and emotional support to families affected by childhood liver disease according to individual needs. The support service includes:
- CLDF Literature Service
- CLDF On-Call
- CLDF Face2Face
- e-talk
CLDF's young persons support officer also provides a Face2Face programme for children and young people, and 'CLDF Time 4 U' - a confidential e-mail and telephone support line.
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Circles Network provides unique personal support for people who are in danger of becoming socially excluded, or who are currently suffering the consequences of prior segregation and discrimination.
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CLAPA was set up in 1979 as a partnership between parents and health professionals. It provides support for new parents, and for people with the condition and their families, from infancy through to adulthood. There are 27 CLAPA branches (all run by volunteers) and many other regional contacts in the United Kingdom, each committed to providing the support needed by families affected by cleft lip and/or palate.
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Charity for the support of Children Living with Inherited Metabolic Diseases
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For families with disabled children Across the UK, a child is diagnosed with a severe disability every 25 minutes. Although some children need hospital care, 98% of disabled children live at home with a parent or other family member who may not have expected to be in this position but who has quickly had to become an expert.
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Contact a Family is the only UK-wide charity providing advice, information and support to the parents of all disabled children - no matter what their disability or health condition. We also enable parents to get in contact with other families, both on a local and national basis. Each year we reach at least 275,000 families.
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We run play schemes for children of all disabilities in the Easter and Summer holidays, giving the parents much needed repite and the children routine and stability, 6 weeks off schools for any child is long for a special child it's traumatic as well as confusing. We at PALS bridge the gap of long holidays for these children and make going back to school much much easier for them.
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01685 874396 |
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Since the founding of the CF Trust in 1964, we have been working to improve the lives of people with CF, raise the profile of CF and fund research into a cure. Our objectives are to: - Fund medical and scientific research to develop a cure and provide effective treatments for Cystic Fibrosis.
- Ensure appropriate clinical care for those with Cystic Fibrosis.
- Provide information, advice, support and, where appropriate, financial assistance to anyone affected by Cystic Fibrosis.
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Diabetes UK is the leading charity working for people with diabetes, funding research, campaigning and helping people live with the condition. Our mission is to improve the lives of people with diabetes and to work towards a future without diabetes. Diabetes UK first opened its national office in Wales in 1996. Its aims are to provide a comprehensive bilingual service for people interested in diabetes, to make diabetes a priority at a political level and to lobby for the improvement of the quality of diabetes services in Wales. This section describes the work Diabetes UK Cymru, including supporting people with diabetes, healthcare professionals and local voluntary groups, organising fundraising activities and campaigning
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The Trust exists to make a positive difference for individuals with Down syndrome. It achieves this goal by working with their families, as well as professionals and researchers involved in their development.
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- We provide information and support for people with Down’s syndrome, their families and carers, as well as being a resource for interested professionals.
- We strive to improve knowledge of the condition.
- We champion the rights of people with Down’s syndrome.
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Dynamic is a Wrexham based charity that provides out of school activities and training for children and young people with physical, intellectual or sensory impairments, emotional and behavioural problems or chronic illness.
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Our mission is to ensure that all individuals with dyslexia are identified and educated to allow them to be successful by:
- providing accurate assessment and the most appropriate teaching
- working to influence and improve the practice of mainstream educational services for children and adults with dyslexia, through specialist teacher training, the development of high quality teaching tools, the evaluation of teaching methods to achieve better practice, and by improving awareness and understanding of dyslexia.
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The Dyspraxia Foundation is a country Wide charity, founded in 1987 as the Dyspraxia Trust by two mothers who met at Great Ormond Street Hospital for Sick Children. After being told that their children had Dyspraxia they were astonished and dismayed to discover that no facilities existed to help or inform parents and children with the condition. They decided to form their own group to help others to help themselves. Today the Foundation, with its head quarters in Hitchin, answers approximately 10,000 enquiries and distributes more then 20,000 leaflets about the condition, annually. The Foundation seeks every opportunity to increase understanding of Dyspraxia, particularly among professionals in health and education and encourages its local groups to do the same. It continues to encourage the smaller local groups to thrive and develop their own ideas and to distribute information and fund raise for themselves.
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We offer help to parents and professionals by:
- Giving support to parents, adults and children.
- Putting parents in contact with each other.
- Producing quarterly newsletters.
- Help with obtaining medical information.
- Advice on benefits and aids for the children.
- Holding annual events for families.
- Producing many information sheets on Erb's Palsy and treatments available.
- Holding annual education days for professionals.
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Conductive Education (CE) teaches children and adults with physical disabilities such as cerebral palsy, dyspraxia, multiple sclerosis, Parkinson’s, stroke and head injury how to overcome their movement problems to lead more independent, dignified and fulfilled lives.
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The Haemophilia Society is working for people with haemophilia, von Willebrand's or a related bleeding disorder and their families to secure the best possible care, treatment and support.
We also provide services for people with haemophilia affected by HIV and hepatitis C.The Haemophilia Society has a strict confidentiality policy and is committed to equal opportunities. We also have a policy on complaints and a leaflet can be provided on request.
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We are a voluntary organisation set up to offer help and support to children with heart disorders and their families regardless of how slight or severe the condition may be.
Having a baby or child with a heart disorder is very stressful, particularly at the time of diagnosis, before surgery and postoperatively. No matter how helpful and supportive hospital staff are, as parents you will always have worries and unanswered questions. It may be helpful to talk to another parent who has experienced a similar situation and understands how you feel.
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HADC is the oldest established dyslexia centre in the UK and believes that anyone with dyslexia should be offered expert assessment and tuition regardless of the Ability to Pay
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The Huntington's Disease Association exists to support people affected by the disease and to provide information and advice to professionals whose task it is to support Huntington's disease families. The HDA is financed through the generosity of trusts, foundations, the statutory and corporate sectors, branches of the HDA, members and friends.
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The Hyperactive Children's Support Group is a registered charity which has been successfully helping ADHD/Hyperactive children and their families for nearly 30 years. The HACSG is Britain's leading proponent of a dietary approach to the problem of hyperactivity.
The Hyperactive Children's Support Group hopes that this website will serve as a useful tool for all those parents and health professionals who believe that the use of drugs to treat this difficult problem (which seems to be affecting more and more children) should be a last, rather than first, resort. The Group has helped thousands of children over the years since its foundation in 1977 and has substantial documentary evidence, supported by scientific studies, which show that a dietary and nutritional approach to ADHD/Hyperactivity is well worth trying.
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I CAN is the Charity that Helps Children Communicate.
Communication – a Vital Link to Life
I CAN is the children’s communication charity.
We work to foster the development of speech, language and communication skills in all children with a special focus on those who find this hard: children with a communication disability.
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Links parents of children with similar special needs. Special interest in helping parents of children with rare and complex conditions
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0161 905 2440 |
Email: |
N/A |
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Mission Statement - INTERPLAY is a project to provide and support integrated play and leisure opportunities for young people between the ages of 2 - 19 who have special needs, within the area of South Wales.
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Leukaemia CARE exists to provide vital care and support to all those whose lives are affected by leukaemia, lymphoma and the allied blood disorders. Our work extends to the welfare of families and carers, as well as that of patients themselves. Quite simply... 'supporting a quality of life'.
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The Lymphoma Association provides emotional support and information on a range of issues to anyone with lymphatic cancer and to their families, carers and friends.
When you learn that you have a lymphoma, whether Hodgkin lymphoma (formerly known as Hodgkin's disease) or non-Hodgkin lymphoma, you may know little about it. In these circumstances, it is very natural to feel fear or anxiety. We believe, however, that knowledge conquers fear and that the more you know about something, the less afraid and anxious you are likely to be.
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The ME Association (The MEA), founded in 1976 funds and supports research and provides information and support, education and training. In this role, we benefit people with ME (myalgic encephalopathy)/CFS (chronic fatigue syndrome), professionals and all others interested in the illness.
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Mencap is the UK's leading learning disability charity working with people with a learning disability and their families and carers.
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The Meningitis Trust is an international charity with a strong community focus, fighting meningitis through the provision of support, education & awareness and research.
Our vision and mission encapsulate what we are striving to achieve:
- Vision– “Working toward a world that is free from meningitis and where those affected by the disease receive quality care and support”
- Mission– “Continuing to be the world authority on meningitis, leading the fight against the disease and empowering people and organisations through collaborative working, to reduce the threat of meningitis and its impact on people everywhere.”
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The Society for Mucopolysaccharide Diseases (the MPS Society) is a voluntary support group founded in 1982, which represents from throughout the UK over 1200 children and adults suffering from Mucopolysaccharide and Related Lysosomal Storage Diseases, their families, carers and professionals. Membership is open to individuals who are resident in the United Kingdom and who meet the agreed criteria. The Society is a registered charity entirely supported by voluntary donations and fundraising and is managed by the members themselves. The Society has the following aims:
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The Muscular Dystrophy Campaign provides information and support to people with neuromuscular conditions and their families, through its MDC Care Advisors, its information service and a wide range of information materials and factsheets. The Joseph Patrick Trust can provide grants for individuals towards the cost of equipment and wheelchairs.
The Muscular Dystrophy Campaign's information and support service provides information and support via telephone, email, fax and letters. It can also direct you to various advice and support services.
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To someone affected by Myasthenia Gravis it means that symptoms vary according to the amount of activity undergone, the onset of infection or stress of any kind.
As a result diagnosis by a GP is extremely difficult. Also family and friends need a great deal of understanding to come to terms with a relative or friend who seems perfectly normal one moment, and a few hours, or even minutes later is droopy and listless. Activities taken for granted by most of us become difficult or even impossible at times for myasthenics. Simple things like eating food, lifting arms, speaking to friends or laughing.
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Asthma UK Cymru was established in 2005, in line with political devolution. We recognised that Wales is developing its own systems, structures and priorities and that having local staff would enable the charity to work more effectively for people with asthma in Wales.
Our specialist local knowledge helps us to:
- Understand the issues that matter to people in Wales and identify how we can help.
- Build partnerships with the people and bodies that can help us to make a difference.
- Maintain specialist knowledge of the health service in Wales and know how to influence it.
- Ensure that people with asthma are represented where decisions are made that affect them, especially at the Welsh Assembly Government and the National Assembly for Wales.
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- Every deaf child has the right to the same opportunities as a hearing child
- Every deaf child has the right to be included and valued by society
- Families have the right to make informed choices on behalf of their deaf child and for those choices to be implemented
- Families have the right to clear and balanced information and support, delivered in a way that is accessible to them
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The National Eczema Society:
- is the only organisation in the UK and one of the most established organisations worldwide dedicated to the needs of people with eczema, dermatitis and sensitive skin.
- can help by providing the practical information and support needed to manage your skin problem effectively. The helpline of the Information Department can provide you with full access to the latest information through membership, providing support for people with eczema and their carers.
- knows and understands the related social, personal and psychological effects of eczema and can help you manage your lifestyle accordingly to complement and support effective medical treatment and care.
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The Foundation has endeavoured to make the general public aware of the disease and the need for early diagnosis. The Foundation also provides support for parents whose children have suffered from Reye's syndrome. The administration of the Charity is undertaken entirely voluntarily.
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The NSPKU exists to help and support people with PKU, their families and carers. It was formed in 1973, see history.
The NSPKU actively promotes the care and treatment of PKUs and works closely with medical professionals in the UK.
It organises conferences and others throughout the UK, publishes a wide range of publications (including food lists) for parents, PKUs and medical professionals.
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This site describes our work, as a leading children's charity and provider of children's services in the UK.
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We are a national network of parents working towards properly resourced inclusive education for all children with special needs.
Our Concern is :
For Children with special educational needs.
Our Focus is :
The legislation affecting the education provision for our children.
Our Vision is :
Of inclusive schools, properly resourced to meet the curricular needs of all children and recognising the rights of all children to be pupils amongst their peers, whilst being educated according to their needs.
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Parents for Inclusion is a network of parents of disabled children and children with 'special needs'. In our families and as an organisation we have worked together with disabled people to build inclusive communities in ordinary life, where all people are truly welcome.
We are a national charity, and started in 1984 as Parents in Partnership. Our experiences have led us to develop the following 'tools' for parents. Most importantly, we work closely with disabled adults, to bring their understanding and experience to parents, so that parents can become real allies to their disabled children.
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PERTHES ASSOCIATION is an entirely Voluntary Organisation, founded in 1976. It moved to Guildford in 1991 and became a National Charity. The Association aims to help and advise families of children suffering from Perthes' disease and Associated conditions in all parts of the British Isles and abroad. Perthes' disease ( a potentially crippling disease of the hip) is a form of osteochondritis, which affects 5.5 per 100,000 children (mainly boys) between the ages of 2 and 15 years.
The Association gives advice on practical and financial help available, and supports any family with a child suffering from Perthes' disease, or M.E.D. (Multiple Epiphyseal Dysplasia - which is not self-limiting, and affects many joints), or other forms of Osteochondritis including Severs disease, Kohler's, Osgood Schlatter's, & Scheuermann's disease. We have more recently supported families and supplied equipment for children with C.D.H. (Congenital Dislocation of the hip).
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Our aims are to promote a better communication between doctors and patients, to disseminate information and to raise funds for research and welfare projects. Research is essential if we are to determine the cause and find better treatments in the future. Newsletters are issued quarterly giving information on research and treatments which are available. Publications on Raynaud’s, scleroderma and related conditions are available from the organisation
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The RGA is a self-help charity providing and sharing information and support for people with restricted growth conditions and their families. The Association aims to help reduce the distress and disadvantages of persons with restricted growth by trying to: - Reduce social barriers
- Improve quality of life
- Enhance the role in society of persons of restricted growth
- Lessen the fear and distress of families when a child with restricted growth is born
- Provide fellowship, mutual support and encouragement for individuals and their families
- Further self-fulfilment and independence
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RNIB Cymru works for the 100,000 people in Wales with serious sight loss. We deliver a wide range of services, providing practical solutions to everyday challenges. We campaign for inclusion of people with sight loss and run pilot projects within our communities. We promote eye health by running public health awareness campaigns and we work in partnership with many organisations across Wales to provide local services
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We aim to make daily life better for deaf and hard of hearing people. Our campaigns, information, services and support of scientific and technological research are some of the ways we're trying to help. We also support other organisations in their aim to provide better services to their deaf and hard of hearing employees and customers.
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Welcome to Scope, the disability organisation in England and Wales whose focus is people with cerebral palsy. Our aim is that disabled people achieve equality: a society in which they are as valued and have the same human and civil rights as everyone else.
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Sense has a worldwide reputation for its expertise in working with deafblind people. We also work with people with single sensory impairments and a wide range of other difficulties - including physical disabilities, learning disabilities, and challenging behaviour. Sense works with a wide age range, from babies who have just been diagnosed to older people. We also offer training and other services related to deafblindness.
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The Society provides a wide range of services from information, advice and counselling, to financial help, holidays, briefings, seminars and training. The Society is committed to ensuring that sufferers benefit directly from voluntary donations that make up the welfare fund.
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SNAP Cymru is the leading Parent Partnership Service in Wales. SNAP Cymru is a Voluntary Organisation, which offers information, advice and support to families of children and young people who have, or may have Special Educational Needs and or Disability.
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S.O.F.T UK provides support for families affected by Patau's Syndrome (Trisomy 13), Edward's Syndrome (Trisomy 18), partial Trisomy, mosaicism, rings, translocation, deletion, and related disorders. Finding out that your baby has a disorder that you may have never heard of is alarming and brings all sorts of anxieties. The SOFT booklets fulfil a desperate need for helpful, practical and positive information presented in a sensitive way. For most, our first contact with SOFT is through the leaflets and booklets is publishes.
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Within this website you will not only find specific information regarding work carried out by the Agency but also a wealth of social care information covering; Adult and Children Services and the vast number of groups and organisations. We are constantly seeking to develop and improve this website and would welcome your thoughts by contacting us in the link below.
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The National Centre for Young People with Epilepsy (NCYPE) is the UK’s major provider of specialist services for children and young people with complex epilepsy and other neurological conditions. These include Aspergers, autism and a wide range of learning difficulties from moderate to profound and multiple.
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Therapy for Children with Developmental Delay whether caused by Cerebral Palsy, Genetic Disorder or Brain Injury
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BIBIC is a national charity offering practical help to families caring for children with conditions such as autism, cerebral palsy, Down’s syndrome, developmental delay, traumatic and acquired brain injury and specific learning difficulties such as attention deficits hyperactivity disorder, dyslexia and dyspraxia.
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Our Aims are:
- To provide information, advice and expertise
- To raise awareness about bladder and bowel problems
- To foster education and promote research
- To influence policy-makers and providers of services (public and private)
- To co-operate with other charities and with professional organisations
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For many people, when they are first diagnosed with dystonia, or think they may have the condition, the first thing they seek is information: about dystonia, about how it is treated, and about how it might affect their daily lives.
Our "About Dystonia" section provides some basic information about the different types of dystonia, the range of drug and other treatments available, and how having dystonia can affect your life.
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A voluntary organisation for deaf babies, pre-school deaf children from 0 - 5 years and their parents.
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The Living Paintings Trust is a charity that was established to enrich the lives of visually impaired adults, young people and children throughout Britain, by giving them the chance to explore and enjoy the visual arts. We currently run unique programmes which improve the lives of thousands of visually impaired people by opening for them doors to a world of colour and perception which they had thought shut forever.
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The website includes information about autism and Asperger's syndrome, the NAS and its services and activities.
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TOFS (Tracheo-Oesophageal Fistula Support) was set up in 1982 by parents of children born with TOF and associated conditions. Their aim was to reach out to other families in a similar situation.
Twenty five years on and now a registered charity, we continue to help families through the challenges of bringing up a child with TOF/OA, VACTERL and associated conditions.
We do this by providing one-to-one support and a range of information and resources to families. TOFS is a recognised source of information for professionals with an interest in TOF/OA. We also take an interest in research into the causes and implications of these conditions.
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As you can see, the site is under development at the moment. However, you can contact Vision Aid via the number below. Vision Aid is a national organisation offering practical help and advice to the families of children with sight difficulties. Started by parents, we offer friendship and support to families who may be feeling confused or isolated, caring for a child with special needs. Any child in the UK who has difficulty with their sight, is partially sighted or has no sight at all, can benefit from Vision Aid's service. Children with special needs are also welcome. Professionals working alongside children with visual impairment may also make use of our service and facilities.
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Children and Young People's Service
A specialist children’s centre offers daily therapy services (physiotherapy, hydrotherapy, occupational therapy and speech and language therapy) and nursery education to young children with cerebral palsy or a similar disability.
Family support services are provided for children and young people who have a wide range of physical and learning disabilities. Opportunities include Play and Youth Schemes, a Family Link Scheme, and day and overnight activity breaks at Treetops or in the family home (domiciliary care).
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Young Arthritis Care is a self-help support group run for all young people with arthritis — anyone up to the age of 45. It has a National Committee made up of young people with arthritis. It has a nationwide network of contacts consisting of young people with arthritis or parents of children with arthritis who help, support and advise others in similar situations to their own. There are local groups around the country which allow members to get together, share information and give each other support. Various publications are available on request, including a regular magazine and a Ruff Guide for young people with arthritis.
Projects currently running are Personal Development Programmes for young people and Positive Future Workshops for teenagers. These weekend residential courses are aimed at sharing experiences with others and building confidence.
All Arthritis Care and Young Arthritis Cares work is aimed at promoting self-help and independence, and empowering young people with arthritis to live positive lives.
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