Category:Downs Syndrome

DOWNS SYNDROME LINKS

http://content.impactengine.com/ieViewer.php?tid=61789 Moving photo-essay by Gabriel's dad http://www.lestermagoogan.co.uk/main.htm is it art, or is it a laugh? make up your own mind! Equal futures website - all about circles of support Autism one-stop shop (Edinburgh and Lothians) The Autism Resource Centre (ARC) Greater Glasgow Health Board area Circles network - the Glasgow children's project Holiday caravan - with disabled access ramp - is managed by the Ayrshire Branch of DSS at Haggerston castle near Berwick upon Tweed - phone John Gilfillan, 01294 217788 prices from £130 per week, Friday to Friday. Early booking recommended. Want up to date advice about additional support for learning? Try this brilliant new website - people with learning disabilities in the Glasgow area can make friends safely using the internet and have their own webpage for free! 25th Sept - The latest Newsletter is now available on the Downs Heart Group Website. http://www.dhg.org.uk/scripts/newsletters.pl Help for students with disabilities - new guidance http://www.scotland.gov.uk/Publications/2006/08/18093051/17 23 August: "Children who can only speak through computerised aids are being helped to tell jokes through a new "language playground". http://www.capability-scotland.org.uk/news_detail.asp?newsID=94 Moving On - transition to adulthood brings new challenges - read the guide BRAKING NEWS.....Try this great electric trike - the electric scream machine (and a non-battery powered alternative) are available from Halfords and Toys R Us for around £100, suits all kids aged 6- 11 or so . The Campaign For Real Choice (07/12/06): A year after the extension of the Disability Discrimination Act, Ben Furner looks at what has been achieved since, and what remains to be done to improve the lives of disabled people. http://www.inclusionscotland.org/news/story.asp?id=1379 http://www.downssupport.org.uk/ a new website - one to watch! shifting perspectives exhibition http://www.slpwebsites.com

ADHD On-line support group www.adders.org Our objective is to promote awareness to AD/HD (Attention Deficit/Hyperactivity Disorder) and to provide information and as much free practical help as we can to those with the condition, both adults and children, their families in the UK and around the World via this website. Advances in Psychiatric Treatment apt.rcpsych.org/ Advances in Psychiatric Treatment is aimed at practising mental health professionals who need to be kept informed of current ideas, techniques and developments in psychiatry. Each issue includes commissioned articles dealing with physical and biological aspects of treatment, psychological and sociological interventions, management issues and treatments specific to the different psychiatric sub-specialities. Ann Craft Trust www.anncraftrust.org National Association working in the interests of people with Learning Disabilities who may be at risk of abuse. Has useful publications and links to related websites. American Association on Mental Retardation www.aamr.org On-line resource which aims to augment AAMR's activities and give rapid access to information about the mental retardation and disabilities field.

Angelman Syndrome Support Education and Research Trust (ASSERT) http://www.angelmanuk.org/title.htm

Bond hotel, Blackpool - www.bondhotel.co.uk Good facilities for people with disabilities British Epilepsy Association www.epilepsy.org.uk Website containing "everything you need to know about epilepsy". The site also contains an Email Helpline service which will do its best to email you a reply to an issue which is not included on the site within 48 hours.

British Institute of Learning Disability www.bild.org.uk BILD is the British Institute of Learning Disabilities, a not for profit organisation with charitable status, which exists to improve the quality of life of all people with a learning disability. The site provides information, publications and training and consultancy services for organisations and individuals. British National Formulary www.bnf.org Website providing UK healthcare professionals with authoritative and practical information on the selection and clinical use of medicines in a clear, concise and accessible manner. Contact a Family www.cafamily.org.uk Directory of the organisations in the UK who provide family support (and often very useful medical information for professionals) on a wide range of syndromes including rare conditions. Connects, the Mental Health and Learning Disabilities portal www.connects.org.uk Connects is a worldwide, interactive, personalised forum for the sharing of information by people interested in mental health problems and/or learning disabilities. Contains more than 8,000 resources including details of news items, events, websites and organisations.

Cruse Bereavement Care www.crusebereavementcare.org.uk Cruse Bereavement Care is the national organisation for bereaved people. Some Cruse branches have bereavement supporters who work with people with intellectual disabilities. Cruse provides information about local bereavement support services and also gives welfare advice (tel: 0845 7585 565).

The Department of Health - Learning Disabilities www.doh.gov.uk/learningdisabilities

Down's Heart Group PO Box 4260 Dunstable LU6 2ZT www.dhg.org.uk tel: 0845 166 8061 fax: 0845 166 8061 mobile: 07900 678867

The Down's Heart Group is a UK charity which offers support and information to families who have a member with Down's Syndrome and congenital heart defects. The site contains information about heart defects, tests and procedures, and other topics of interest, as well as details of the support and information available from the Down's Heart Group.

Down's Syndrome Association UK http://www.downs-syndrome.org.uk Large website that also contaions a lot of downloadable medical information on Down's Syndrome and useful links Down's Syndrome Medical Interest Group www.dsmig.org.uk This site provides essential information for healthcare professionals on 'best practice' medical care for people with Down's syndrome in the UK and Ireland. It has been produced by the UK Down's Syndrome Medical Interest Group (DSMIG), a network of doctors whose aim is to ensure equitable provision of medical care for all people with Down's syndrome in the UK and Republic of Ireland. Down's Syndrome Scotland (formerly Scottish Down's Syndrome Association) www.dsscotland.org.uk The website of Down's Syndrome Scotland, formerly known as Scottish Down's Syndrome Association. The site provides a source of information and news on the organisation's current activities throughout Scotland Dr. Alpers http://www.myhq.com/public/a/l/alper/ Site for Medical Professionals that includes many useful links. Epilepsy: National Society for Epilepsy www.epilepsynse.org.uk British Epilepsy Association www.epilepsy.org.uk Two large epilepsy charities producing a wide range of resources and medical information - users need to register to obtain password to log on to professional sections. Homepages owned by a person with personal experience of epilepsy (note: not to be used as a source of medical or drug information)  http://www.fit-and-well.co.uk European Association of Intellectual Disability Medicine www.mamh.net MAMH is an organisation of European doctors working within different specialties who are committed to high quality medical care for people with learning disabilities. It aims to bring together knowledge of service provision, medical education, research and evidence based medical care from Europe and the rest of the world and to eventually establish 'Intellectual Disability Medicine' as a specialty in all European countries.

Evidence Based Bulletins (Wales) - Learning Disabilities http://hebw.uwcm.ac.uk/learningdisabilities/index.htm Thorough review of evidence in literature for various aspects of the management of people with Learning Disabilities. FAS Aware (Foetal Alcohol Syndrome) www.fasaware.co.uk FASAWARE is one of three UK charities dedicated to providing support and education to the general public about FAS. It has numerous resources and links to UK, international, and other sources of information. The Foundation for People with Learning Disabilities www.learningdisabilities.org.uk This is a site is run by the Foundation for People with Learning Disabilities, the leading UK charity researching learning disability issues. The site features the latest news and events on learning disability issues, as well as information on topics such as advocacy, accommodation and employment.

The Fragile X Society www.fragilex.org.uk A page containing information on Fragile X syndrome, its causes, its effect on families, and information on the Fragile X Society.

International Association for the Scientific Study of Intellectual Disabilities www.iassid.org The International Association for the Scientific Study of Intellectual Disabilities is an international and interdisciplinary scientific organization that promotes worldwide research and exchange of information on intellectual disabilities.

Housing Options http://www.housingoptions.org.uk Housing Options is an independent advice and information service for people with learning disabilities. The aim is to assist people with learning disabilities achieve greater control over aspects of their life and to provide more housing and support choices. Medical Aspects of Mental Handicap http://www.mamh.net Read the latest news about Learning Disability Services in different European countries. Mencap learning disability helpline: 0808 808 1111 http://www.mencap.org.uk/ Mencap is a UK charity working with and for people with a learning disability and their parents and carers. The helpline offers free, confidential and independent information and advice on virtually any subject to do with learning disability. Mencap has a lot of local knowledge, and a network of connections nationwide. This means that they can link you up with organisations or services in your area that can help.

The National Association for the Dually Diagnosed http://www.thenadd.org NADD is a not-for-profit membership association established for professionals, care providers and families to promote understanding of and services for individuals who have developmental disabilities and mental health needs.

National Electronic Library for Health http://www.nelh.nhs.uk/nelld The aim of this site is to provide access to best current knowledge in relation to the development and delivery of services for people with a learning disability.

National Institute of Mental Health - Learning Disabilities http://www.nimh.nih.gov/publicat/ldmenu.cfm Includes a booklet providing information on learning disabilities and the role of NIMH sponsored research in discovering underlying causes and effective treatments. Also includes press releases and details of the latest clinical trials. NHS Direct Online www.nhsdirect.nhs.uk This site was re-launched in 2001 - one of the features includes an interactive email facility where users can enter their query, and it will be responded to by a health information professional within five working days. It also features a health encyclopaedia covering illnesses and conditions, tests, treatments and operations.

National Autistic Society http://www.nas.org.uk Largest UK charity working for people with Autism. Useful list of publications, information and links to autism sites.

National Society for Epilepsy http://www.epilepsynse.org.uk The National Society for Epilepsy is committed to providing information and support to people with epilepsy. It also provides care for people with epilepsy through medical and residential services. Number Six http://www.number6.org.uk/ The One stop shop for Autism in the Lothians Norah Fry Research Centre http://www.bris.ac.uk/Depts/NorahFry/ Research on services for people with learning disabilities.

OMIM - Online Mendelian Inheritance in Man http://www.ncbi.nlm.nih.gov/Omim This database is a catalog of human genes and genetic disorders with up-to-date medical reviews of each.. The database contains textual information, pictures, and reference information.

RD4U www.rd4u.org.uk RD4U is Cruse Bereavement Care's Young People's Website which is designed for young people by young people, and provides support to people after the death of someone close. It has a (monitored) message board and other youthful therapeutic activities, and an email support service manned by trained young volunteers. The upper age limit for users of the site is 25 years old. Royal College of Psychiatrists http://www.rcpsych.ac.uk/ Clicking on the publications page of this site leads you to fact sheets and leaflets. Books Beyond Words (as featured in 'Learning about Intellectual Disabilities and Health') can be ordered via this web-site.

Royal National Institute for the Blind www.rnib.org.uk The RNIB site contains information on common eye conditions; practical help with everyday living at home, work and school; information about how sight problems affect the population, and accessible materials and links to resources in your area.

Royal National Institute for Deaf People www.rnid.org.uk information for deaf and hard of hearing people on services, support and resources.

The Same as You www.scotland.gov.uk/library3/social/tsay.pdf An NHS Scotland review of services for people with learning disabilities in Scotland.

Unique www.rarechromo.org Unique is a source of information and support for families of children with rare chromosome disorders.

Williams Syndrome Foundation www.williams-syndrome.org.uk Contains information on Williams Syndrome for parents, and also more in-depth medical information. HOME