Special needs
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The page contains an A-Z list of all the Special Needs Support Organisations we have identified through our recent research and visitor poll. They are mainly national organisations but we have included several local organisations too. If you are looking for information about a specific condition but don't have the name of a specific organisation we would recommend using the 'Find (on This Page)' function from within the 'Edit' menu of your Internet Browser.
AbilityNet AbilityNet is a national charity and the UK’s
leading provider of expertise on computing and disability.
They offer a one-stop shop for Tel: 0800 269545 or 01926 312847 Fax: 01926 407425 email: enquiries@abilityNet.org.uk
Action For Blind People Action for Blind People is a UK based charity that works to inspire change and create opportunities to enable blind and partially sighted people to have an equal voice and equal choice. Their aim is to enable visually impaired people to transform their lives. Action for Blind People Telephone: 020 7635 4800 Fax: 020 7635 4900 email: info@afbp.org
ADDISS This organisation provide people-friendly information and resources about Attention Deficit Hyperactivity Disorder to anyone who needs assistance - parents, sufferers, teachers or health professionals. ADDISS Tel: 020 8906 9068 Fax: 020 8959 0727 email: info@addiss.co.uk
Afasic Afasic was founded in 1968 as a parent-led organisation to help children and young people with speech and language impairments and their families. It provides information for parents and professionals and produces a range of publications. Members meet in local groups in many areas of the UK. Afasic seeks to raise awareness and to create better services and provision for children and young people with speech and language impairments. Afasic Tel: 020 7490 9410 Fax: 020 7251 2834 email: info@afasic.org.uk
www.aledgriffiths.co.uk - this site has been set up by the parents of a little boy born with Vacterl Syndrome (or VACTERL / VATER Association). Their aim for the site is to pass on information this condition and to find other people who are coping with similar problems to their sons.
The Alexander Trust The Trust aims to raise funds for special projects such as respite care, provide support and information to special needs families and provide specialised equipment, not available on the National Health. The Trust also researches into dolphin assisted therapy centres around the world and their facilities, to enable them to provide accurate information to special needs families. The Alexander Trust
Allergy induced Autism (AiA) AiA is a parent led charity offering informtion on diet intervention with autism together with promoting research into the biological and physiological problems in the condition, focussing on allergies, immune system dysregulation and bowel disease. The web site is highly interactive with other parents always on hand to help answer questions and share problems. Membership of AiA provides a quarterly update Newsletter together with a comprehensive resource book. Membership details can be found on the site. AiA Tel/Fax: 01733 331771 email: aia@autismmedical.com
Association for Spina Bifida and Hydrocephalus (ASBAH) This organisation provides detailed information about the conditions spina bifida and hydrocephalus and offers further links to related organisations. ASBAH Tel: 01733 555988 Fax: 01733 555985 email: postmaster@asbah.org
Awares Awares, the All Wales Autism Resource, aims to provide the visitor with links to all of the autism information and resources you could need within Wales plus other useful online resources outside of Wales. Tel: 01970 625256 email: info@awares.org B Birthmark Support Group The Birthmark Support Group is a registered charity, set up by parents of children with birthmarks in December 1998. Its objective is to provide a UK based support group for anyone with a birthmark. Birthmark Support Group Fax: 01202 257703 email: info@birthmarksupportgroup.org.uk www.birthmarksupportgroup.org.uk
British Institute for Brain Injured Children (BIBIC) Many of us take learning for granted. From birth we discover new skills and develop a fuller understanding of the world around us. For children with a learning difficulty this process isn't so easy. It can be difficult for them to make sense of the things others take for granted. BIBIC exists to help these children reach their full potential and live a fulfilling and personally more rewarding life. BIBIC's involvement also benefits carers too. British Institute for Brain Injured Children Tel: 01278 684060 Fax: 01278 685573
British Deaf Assocation The BDA aims to develop pride, identity and awareness of the rights and responsibilities of deaf people. British Deaf Assocation Text Phone: 020 7588 3529 (24hr answerphone) Voice phone: 020 7588 3520 Fax: 020 7588 3527 Video Phone: 020 7496 9539 email: helpline@bda.org.uk
British Dyslexia Association The BDA is the voice of dyslexic people. They aim to influence government and other institutions to promote a dyslexia-friendly society. They also promotes early identification and support in schools to ensure the opportunity to learn for dyslexic learners. The BDA aims to represent the needs of dyslexic people on leaving school, in higher education and in the work place. British Dyslexia Association Tel: 0118 966 2677 Fax: 0118 935 1927 email: admin@bda-dyslexia.demon.co.uk
British Epilepsy Association Epilepsy Action is the working name for British Epilepsy Association who provides a wide range of services and information to support anybody with an interest in epilepsy. They have a comprehensive web site that includes special pages for children and teenagers. British Epilepsy Association Tel: 0113 210 8800 Fax: 0113 391 0300 email: epilepsy@epilepsy.org.uk
British Institute of Learning Disabilities (BILD) BILD is a not for profit organisation with charitable status, that exists to improve the quality of life of all people with a learning disability. They provides information, publications and training and consultancy services for both organisations and individuals BILD Tel: 01562 723015 Fax: 01562 723029 email: M.Davies@bild.org.uk C Changing Faces Changing Faces aims to enable everyone affected by facial disfigurement to deal with it positively. Facial disfigurement, whatever its cause, poses major challenges for individuals affected and their families, for health care professionals and the services they provide, and for society as a whole. Changing Faces Tel: 0207 7064232 email: info@changingfaces.co.uk
Children's Liver Disease Foundation In 1980, the Children's Liver Disease Foundation was the first charity to be established concerned with liver disease. Today it leads the field in caring for babies and children with liver disease and their families by:
Children's Liver Disease Foundation Tel: 0121 212 3839 Fax: 0121 212 4300 Email: cldf@childliverdisease.org
Cleft Lip and Palate Association (CLAPA) Though one in every 600-700 children in the UK is born with a cleft of the lip or the palate, the general public has little knowledge of the condition. The CLAPA web site attempts to answer some of the most commonly-asked questions about cleft lip and palate and provides information on the services and advice offered by CLAPA, including details of local parent-parents support groups, local hospital cleft teams proposed talks and educational events and social activities. CLAPA Tel: 020 7431 0033 Fax: 020 7431 8881 Email: info@clapa.com
Contact a Family Contact a Family is a charity for families with disabled children. They have information on hundreds of medical conditions, many of them rare syndromes. They also have information on national and local support groups and on topics such as benefits and education. Contact a Family Tel: 020 7608 8700 Fax: 020 7608 8701 Minicom: 020 7608 8702 Helpline: 0808 808 3555 Freephone for parents and families (10am-4pm, Mon-Fri) email: info@cafamily.org.uk
Croydon Opportunity Pre-School Group (Local) The Croydon Opportunity Pre-School Group, for children with special needs, provides education and care for the child and support for the whole family. They run two pre-school groups in Croydon, that cater for children with a wide range of special needs, through from 3 months to school age.
Cystic Fibrosis Trust Since its birth in 1964, the Trust has been working to improve the lives of CF sufferers, raise the profile of CF and fund research into a cure. Cystic Fibrosis Trust Tel: 020 8464 7211 Fax: 020 8313 0472 Out of hours: 020 8464 0623 email: lyull@cftrust.org.uk
Deafblind UK Deafblind UK offers comprehensive services to deafblind people, their support assistants and other professionals, including:
National Centre for Deafblindness Tel: 01733 358100 Fax: 01733-358356 email: info@deafblinduk.org.uk
www.deafsign.com is a new site, that offers a whole new approach to bringing the Deaf and hearing worlds closer together. The site provides information, contacts and discussion on issues related to deafness and sign language.
Diabetes UK Diabetes UK is the leading charity working for people with diabetes. They fund medical research, provide information and support to people with diabetes and campaign on their behalf. Diabetes UK Tel: 020 7424 1000 Fax: 020 7424 1001 email: info@diabetes.org.uk
Disabled Living Foundation The Disabled Living Foundation advocates that everybody has the right to be independent and equal, has the power to choose, and to live their life to it's fullest potential. Specialist equipment and adaptations can change someone's quality of life. The right equipment can mean the difference between relying on friends and carers, or remaining independent and in control of your own life and this organisation aims to provide the best information and advice on the subject. Disabled Living Foundation Helpline: 0845 130 9177, open Mon - Fri, 10.00am to 4.00pm Tel: 0207 289 6111 email: advice@dlf.org.uk
Downs Syndrome Association The Down's Syndrome Association exists to support people with Down's syndrome, their family and carers as well as providing information for those with a professional interest. It also aim to improve general understanding and awareness of the condition and to champion the rights of people with Down's syndrome. Downs Syndrome Associations Tel: 020 8682 4001 Fax: 020 8682 4012 email: info@downs-syndrome.org.uk
Down's Syndrome Research Foundation The Down's Syndrome Research Foundation is a national charity that aims to relieve the sickness and suffering of children and adults who have Down syndrome. We aim for early intervention and education through the publication of general information and research results to both the public and medical community. Downs Syndrome Research Foundation Tel: 01494 521826 email: dsrf@dsrf.co.uk
The Dyslexia Institute The Dyslexia Institute (DI) is an educational charity, founded in 1972, for the assessment and teaching of people with dyslexia and for the training of specialist teachers. It has grown to become the only national dyslexia teaching organisation in the world. The Dyslexia Institute Tel: 01784 463851 Fax: 01784 460747 email: info@dyslexia-inst.org.uk
The Dyscovery Centre The Dyscovery Centre aims to increase the support provided to both the public and professionals working with individuals with Dyspraxia and related conditions. Dyscovery Centre4a Church Road Whitchurch Cardiff CF14 2DZ Tel: 029 2062 8222 Fax: 029 2062 8333 email: info@dyscovery.co.uk
Dyspraxia Foundation Developmental dyspraxia is an impairment or immaturity of the organisation of movement. It is an immaturity in the way that the brain processes information, that results in messages not being properly or fully transmitted. The Foundation aims to offer support and resources to sufferers and their families. Dypraxia Foundation email: admin@dyspraxiafoundation.org.uk www.dyspraxiafoundation.org.uk E Enuresis Resource and Information Centre The Enuresis Resource and Information Centre (ERIC) is a registered charity that provides advice and information to younger children, teenagers, parents and professionals on the common and stressful condition of nocturnal enuresis or bedwetting. ERIC also offers advice on childhood day-time wetting and soiling. ERIC Tel: 0117 960 3060 Fax: 0117 960 0401 email: info@eric.org.uk
Epilepsy Action Epilepsy Action is the largest member led epilepsy organisation in the UK with around 22,000 members. As well as campaigning to improve epilepsy services and raise awareness of the condition, we offer assistance to local people in a number of ways including a national network of branches, accredited volunteers, regular regional conferences and a Freephone Epilepsy Helpline. Epilepsy Action Tel: 0113 210 8800 Fax: 0113 391 0300 Helpline: 0808 800 5050 Fax Helpline: 0808 800 5555 email: helpline@epilepsy.org.uk F The Family Fund We champion an inclusive society where families with severely disabled or seriously ill children have choices and the opportunity to enjoy ordinary life. The Family Fund helps families of disabled or seriously ill children under 16. We give grants and information related to the care of the child including holidays, leisure, laundry equipment, driving lessons and lots more. Range of information includes benefits, holidays, transport, Taking Care, After age 16 and more. If your income is £23,000 (£21,500 in Scotland) or less we may be able to help. Apply by phone on 0845 130 45 42, online at www.familyfund.org.uk or in writing to Family Fund, PO Box 50, York YO1 9ZX. Please give your child’s name and date of birth, their disability and tell us the help you need.
Gastroschisis Exompholos Extrophies Parents Support Network (GEEPS) GEEPS is a UK based international network of families and friends of children born with abdominal abnormalities. Their web site offers information, personal experiences and discussion area. email: contact@geeps.org
Hamlet Centre (Local) The Hamlet Centre is well known in Norfolk for it's activities for children with disabilities and its provision of services for children and young people with special needs. Hamlet Centre Tel: 01603 616094 email: admin@hamletcentre.org.uk freespace.virgin.net/gerry.uk/menu.htm
Headway - the brain injury association Headway exist to promote the understanding of all aspects of head injury and to provide information, support and service to people with brain injury and their families and carers. They have over 100 local groups around the UK and over 50 run Headway House day care centres. Headway - the brain injury association Tel: 01159 924 0800 Fax: 0115 958 4446 Minicom: 0115 950 7825 email: enquiries@headway.org.uk
I CAN I CAN is the national educational charity for children with speech and language difficulties. It exists to help these children through pioneering work throughout the UK in their own special schools and nurseries and centres within local schools and by providing training and information for parents, teachers and therapists. I Can Tel: 0870 010 4066 Fax: 0870 010 4067
The Jack and Jill Foundation (EIRE) This organisation brings early intervention home respite care to severely developmentally delayed children from birth to four years of age throughout the Republic of Ireland. The Jack and Jill Children's Foundation Tel: + 353 45 894538/660 Fax: + 353 45 894558 email: info@jackandjill.ie
KIDS The KIDS way is unique: there are no other organisations that provide the same extensive range of services to children with every kind of disability, aged from 0-19 years, in partnership with parents. The focus of the services is upon all the needs of the children including educational, social, developmental and emotional. In addition, the services focus upon the whole family and not just on the child with disabilities. KIDS Tel: 020 7359 3635 Fax: 020 7359 8238 email: nat.off@kids-online.org.uk
Koalas (Local) Koalas provides children who have special needs with the opportunity to play alongside children without special needs in a friendly and safe environment. Parents and carers can gain support, information, advice and a few minutes to themselves and at the same time their children can gain new experiences through education and stimulation. Koalas Tel: 01793 615351
National Association for Gifted Children in Scotland (NAGCS) NAGCS is a Scottish charity run by volunteers that brings together and supports teachers, parents and others that are interested in the educational provision for gifted children as well as their social and emotional development. NAGCS contributes by working through partnership with interested organisations and agencies, supporting research into the education and needs of gifted children and providing input into television and radio discussions and to the press email: nagcs.org@talk21.com www.school-resources.co.uk/national_association_for_gifted_.htm
National Autistic Society The National Autistic Society aims to encourage a better understanding of autism and to pioneer specialist services for people with autism and those who care for them National Autistic Society Tel: 020 7833 2299 Fax: 020 7833 9666 email: nas@nas.org.uk
National Children's Bureau (NCB) The NCB promotes the interests and well-being of all children and young people across every aspect of their lives. It advocates the participation of children and young people in all matters affecting them and challenges disadvantage in childhood.p> National Children's Bureau Tel: 020 7843 6000 Fax: 020 7278 9512 email: library@ncb.org.uk
National Deaf Children's Society The National Deaf Children's Society is an organisation of parents, families and carers that exists to support parents in enabling their child to maximise their skills and abilities. The charity produces more than 100 publications and factsheets for parents including general information about deafness and more detailed information about education technology and health. They also have an extensive regional network with representatives available to help parents across England, Northern Ireland, Wales and Scotland. National Deaf Children's Society Tel: 020 7490 8656 Fax: 020 7251 5020 Information & Helpline: 0808 800 8880 (v/t) email: helpline@ndcs.org.uk
National Portage Association (NPA) The National Portage Association is a home-visiting educational service for pre-school children with additional support needs and their families. NPA Tel: 01935 471641 email: npa@portageuk.freeserve.co.uk
React is an independent UK charity founded in 1989 to help children with life-limiting illness under the age of 18 living at home with their families. The charity is unique in the speed with which it responds to cries for help, be it urgent medical equipment, fares to visit a child in a far away hospital, or domestic items which are unavailable from other sources. Last year React met the needs of over 800 families. Tel: 020 8940 2575 Reactive Attention Disorder (R.A.D.) Rachel Ottery is currently developing a newsletter, web site and helpline for birth parents of children with Reactive Attention Disorder. If you would like more information, have any suggestions or would just like someone to shout at you can contact Rachel:
Rett Syndrome Association UK Rett Syndrome is a complex neurological disorder that affects mainly girls. Although present at birth, it becomes more evident during the second year. It could occur in any family at any time. Something goes wrong with the genetic makeup of the cells which become the baby. People with Rett Syndrome are profoundly and multiply disabled and highly dependent on others for their needs throughout their lives. The Rett Syndrome Association UK is a national charity that offers information, advice, practical help, friendship and support to people with Rett Syndrome, their families and carers. Rett Syndrome Association UK Tel: 020 8361 5161 Fax: 020 8368 6123 email: info@rettsyndrome.org.uk There are also two new groups on MSN that have been started for people with Retts children so that people can share experiences and troubles: http://groups.msn.com/mysilentangel/home.htm http://groups.msn.com/RettSyndrome/home.htm
The Rubinstein-Taybi Syndrome UK Support Group The group has been offering support for a number of years to parents with children affected by Rubinstein Taybi Syndrome. Initially, support was given by one mum who kept in touch with everyone by telephone or letter. To make use of today's technologies, the web site was set up to provide information on RTS to a wider audience. The Rubinstein Taybi Syndrome UK Support Group Tel: 01132 503778 email: johnkath@tinyworld.co.uk
Selective Mutism Selective Mutism is an anxiety disorder where a child is uncomfortable speaking in certain situations. Parents may find that when a child first starts nursery, or school, the teachers may come to them and ask why their child won't talk to anyone. Parents can be really surprised by this as they talk normally at home, it is not the way the parent sees their child, or the parent just thinks they are shy. Selective Mutism is only diagnosed, if the child has not spoke to people outside the home for a period of about 6 months, and only when the child has been referred to a psychologist for assessment. The Selective Mutism Group~Childhood Anxiety Network are a group parents and grandparents from all walks of life. What they all have in common is that they have witnessed the pain of children who suffer in silence and we have experienced the frustration of not knowing how to help. They have come together to form a community to help one another and their children. They share experiences and knowledge, fulfilling their mission to promote public awareness, to research and educate about Selective Mutism, and to speak out for their children who can’t speak for themselves. You can also find an Email Support Group at: http://health.groups.yahoo.com/group/Selectivemutismsupportgroup/
Special Kids in the UK This site is for parents in the UK who have a child(ren) with a special need. "Special Needs" covers a broad spectrum but we feel that all parents deal with similar issues of support, education, respite and therapies. We are here mainly to provide a place for parent to parent support but are also hoping to provide useful information for families of special needs children within the United Kingdom. email: information@specialkidsintheuk.org
Speech Teach UK This organisation provides teaching resources for parents and professionals supporting children with speech and learning difficulties, for example dyspraxia, apraxia and autism. Other areas of articulation, literacy and late speaking are also covered together with links and reviews for other websites specialising in these areas. email: catchall@speechteach.co.uk
Snaps (local) The organisation provides activities and playschemes for those children with special needs in Winchester and surrounding areas. Snaps Tel: 01962 840676
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