UK resources for Downs Syndrome - the best links site for UK information
the end of cute - what happens when your child becomes an adult?
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
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
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 .
http://www.downssupport.org.uk/ a new website - one to watch!
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
www.mamh.net
Read the latest news about Learning Disability Services in different European
countries.
Mencap learning disability helpline: 0808 808 1111
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
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
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
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
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
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
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.