UK resources for Down’s Syndrome

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For members of the UK list and others, our kids' photos and members' contributions.

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National organisations

Local groups

Mailing lists for DS – e-mail based discussion groups

Health advice on the web

Education information and advice

Legal resources

Claiming benefit and grants (DLA, carer's allowance etc.)

Disability resources

International DS web sites


Down’s Syndrome Association
This is the main British organisation for DS. The headquarters is shown below, but there are local groups affiliated to it all over the UK, run by parent volunteers. Has expert advisers on tap, publishes newsletter and lots of leaflets/booklets/videos. Offers training to schools etc. as well as directly supporting people with DS and their relatives/carers. The web site includes information for new parents, contact info. for regional officers, fact sheets, campaigining info, etc.

National Office:

Langdon Down Centre
2a Langdon Park
TW11 9PS
Tel: 0845 230 0372
Fax: 0845 230 0373
Web site:

Regional Offices:

DSA Wales
Suite 1, 206 Whitchurch Road
Heath, Cardiff CF4 3ND
Tel/fax: 01222 522511

DSA Northern Ireland
Graham House
Knockbracken Healthcare Park
Saintfield Road, Belfast BT8 8BH
Tel: 01232 704606
Fax: 01232 704075

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Ayrshire branch of Down's Syndrome Scotland
The branch says: 'We currently have around 70 parent members and 40 professional members. Our members with Downs' Syndrome range is from birth to late 40's. We have members from Largs to Cumnock. We have professional members from various areas throughout Ayrshire from Doctors to Psychologists.'

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BADSS - Bristol Area Downs Syndrome Support
An active parent-led support group with around 100 members who aim to enhance the lives of people with Downs Syndrome, their families and care givers in the Bristol Area. Their web site provides information about the Downs Syndrome Association, details of professional support and local support organisations and details of forthcoming events. Contact information, but no address, on the web site.

Claire Turner, 0117 951 6214

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Calderdale Down's Syndrome Group
Parent-led group based in Calderdale, the Metropolitan borough of Halifax in West Yorkshire. Aims to provide support, advice and friendship for people with Down's Syndrome and their families.

Calderdale Down's Syndrome
PO Box 583
West Yorkshire HX2 7WY
Web site:

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Coventry and Rugby Down's Syndrome Support Group
Group of parents who have children with Down's Syndrome, based in and around the Coventry and Rugby area but all are welcome. Meetings bimonthly to share and discuss ideas, knowledge, problems and give help, support and advice. Sometimes just a chat!

Web site:

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Greater Manchester
A parent-led support group providing information for parents, carers and professionals. All volunteers with family and work commitments, who try to answer queries as quickly as possible, but they warn it can take time.

c/o 6 Pastures
Sherwood Way
High Crompton
Helpline (phone, fax and answering machine): 0161 862 9230
Web site:

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Lancashire Down's Syndrome Support Group
A registered charity run by volunteer parents of children with Down's syndrome trying to help and support other parents and adults with Down's Syndrome across the county.

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Leicestershire Downs Syndrome Group
The Leicester group is run by a dedicated team of unpaid volunteers, mostly parents, but who all have a child with Down's Syndrome as a member of their family. The Leicester Group was founded in 1981 by a small group of mothers who met during the early days of their children's lives, to give each other the support, that was unavailable elsewhere. From there the group has grown to provide a large support and advice network to many families right across Leicestershire.

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Lincolnshire Down's Syndrome Support Group
The Lincolnshire Down's Syndrome Support Group exists to provide a network of support, help and advice to all families across the county who have a relative with Down’s Syndrome. The Committee meet on a regular basis and are always looking for new volunteers and ideas. The committee have a large number of books and leaflets available to borrow.

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Down Syndrome Liverpool
Parent-led support group who meet monthly, and are working for the benefits of children and adults in the Liverpool area.

Web site:

DS in Liverpool
Support for all matters relating to Down's syndrome in the Liverpool area from a family with a young adult with DS.

Mrs Marilyn Hill 0151 494 2992
Web site:

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Down’s Syndrome Association: London Branch
The Down's Syndrome Association London Branch was formed in June 2000 to try to meet the needs of a number of young children with Down's Syndrome and their families. The branch is at an early stage of development and would like to hear from any Down’s Syndrome Association members in the London area who are interested in being involved.

Branch secretary/treasurer: Richard Davis
Tel: 0208 815 0070
Web site:

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Down's Syndrome North East
Down's Syndrome North East was formed in 1977 and covers Northumberland, Tyneside, Wearside, Durham, Teesside and Cumbria. See web site for contact details.

Down’s Syndrome OK
A parent-led support group aiming to provide information and advice in South East England to children and adults with Down’s Syndrome, parents, carers and professionals on all matters concerning Down’s syndrome.

Web site:

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Down Syndrome Educational Trust/ Sarah Duffen Centre
The Down Syndrome Educational Trust (DownsEd) (formerly known as the Portsmouth Down Syndrome Trust) is based at the Sarah Duffen Centre in Portsmouth. This organisation provides professional educational activities and resources dedicated to improving the lives of people with Down syndrome. Has expertise on supporting children in mainstream schools, teaching reading to teach language, sleep disturbance, etc. etc. Web site which has a wealth of information.

The Sarah Duffen Centre
Belmont Street
Southsea PO5 1NA
Tel: +44 (0)23 9282 4261
Fax: +44 (0)23 9282 4265

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Down’s Heart Group
About 40 per cent of babies born with Down’s Syndrome will also have a heart defect. The Down’s Heart Group offers support and information to their families and encourages research into the heart problems commonly associated with Down’s Syndrome. The Group maintains a computerised database of members which provides valuable research information and also allows them to put families in contact with other families in similar circumstances, by location, heart defect or other criteria as specified by the family. The Group supports families before and after their child’s surgery, those whose child has not had surgery for whatever reason, and those who have sadly lost their child.

Down's Heart Group
PO Box 4260
Dunstable LU6 2ZT
tel: 0845 166 8061
fax: 0845 166 8061
mobile: 07900 678867
Website :

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Down’s Syndrome Scotland
Scotland is covered by its own association. You will find more info about what they offer on their web site.

Down’s Syndrome Scotland
158-/160 Balgreen Road
EH11 3AU
Tel: 0131 313 4225
Fax: 0131 313 4285
Web site:

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Southampton & surrounding areas: Ups & Downs Group
A voluntary group for parents/relatives/carers of babies/toddlers and pre-school children, in the Southampton and surrounding areas of Hants, Dorset, Wilts (where no group exists), who have Down's Syndrome.

Ring: Francesca on 023 80 575869
Web site:

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Walsall PROUD
P.R.O.U.D. -- Parents, Relatives & Other Understanding Down's --. is a parent led support group (based in Walsall) which started on Saturday 7th August 2004 and meets on the first Saturday of every month 2pm--4pm.

Telephone: 07951 019 506
Web site:

West of Scotland branch of Downs Syndrome Scotland please? -

West of Scotland branch of Downs Syndrome Scotland
Very lively web site, lots happening.

Web site:

Wirral/South Wirral area: Sundowns
SUNDOWNS stands for Supporting, Understanding Needs of Downs Syndrome and is run purely by the volunteer parent/carers who started the charity in 2000.

Telephone: 0151 647 8888
Web site:

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Statements of special educational needs

Most parents on the DS-UK list believe statements are essential to ensure the educational help their children need, especially speech therapy. One member commented that there is a lot of initial hassle, but if you get it right at the beginning, it helps for the whole of your child's school career.

First, get the DSA booklet on statementing which is downloadable from:

The DSA helpline has expert educational advice available:
0845 230 0372 from 10.00 am to 4.00 pm Monday to Friday

The first thing you have to do to get a statement is request what is called 'statutory assessment' -- statutory because it is governed by law, including legal limits on how long LEAs take to do it.. The DSA advises, 'To allow time for negotiation on the contents of the Statement and a possible appeal to the Special Educational Needs and Disability Tribunal if agreement cannot be reached, the assessment needs to be started about a year before the Statement needs to be in place.'

If refused assessment, or a statement, or if you disagree with the final statement, you can appeal to the independent national Tribunal.

Requesting statutory assessment: resources

Information and model letter on requesting assessment:

Longer booklet on requesting assessment -- 'Asking for Statutory Assessment':

Preparing your own evidence

During assessment, the LEA will be getting reports from an educational psychologist, school or nursery staff, NHS staff who know your child, and others e.g. a speech and langauage therapist, and occupational and physiotherapists. If you know anyone else who should contribute, you should let the LEA know. If you have had your own assessments done, submit your own reports.

If your child has any special difficulties, make sure the LEA knows about them, as well as your views on what help she needs and where she should go to school. Visit schools or early years settings to make sure you know what's on offer and can make an informed choice.

What to do when the draft statement arrives

This is a stage you need to read up about. If you are unhappy with any aspect of the draft statement, see information and model letter at:

Longer advice at:

And a highly recommended parent-friendly guide on debugging the draft at:

If you want a mainstream school and the LEA wants to name a special school, get the Governement's own guidance to see the very limited circumstances in which the LEA can refuse your preference: 'Inclusive Schooling - Children with Special Educational Needs' ref. 0774/2001, also free from DfES publications on 0845 602 2260, and downloadable from:

Objecting to the final statement

If after all your efforts the LEA has issued a statement you disagree with, you have the legal right to appeal to the independent Tribunal. Help available from the DSA and IPSEA, as above.

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The Advisory Centre for Education (ACE)
Offers information and advice on all aspects of the maintained education service. They produce an immensely useful handbook, the Special Education Handbook.

Unit 1C, Aberdeen Studios
22/ Highbury Grove
London N5 2DQ
Advice line: 0808 800 5793 (2pm--5pm)
Exclusions advice line: 020 7704 9822
Business line: 020 7354 8318
Web site:

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Alliance for Inclusive Education (formerly the Integration Alliance)
Leads campaign against compulsory segregation of disabled children in special schools. Offers training/awareness raising in disability equality, whole-school policies.

Unit 2, Ground Floor
70 South Lambeth Road
London SW8 1RL
Tel: 0207 735 5277
Web site:

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Campaign for State Education (CASE)
158 Durham Road
London, SW20 0DG
Tel: 0208 844 8206

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The Centre for Studies on Inclusive Education (CSIE)
Collection and dissemination of information about inclusion of disabled children in ordinary schools. Free advice. Lots of publications, many free. The web site contains a huge amount of free information, including a very useful summary of the 1996 Education Act and a list of UK addresses.

New Redland
Frenchay Campus
Coldharbour Lane
Bristol, BS16 1QU
Tel: 0117 344 4007
Fax: 0117 344 4005

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Department for Education and Skills (DfES)
Central government department responsible for education. Gives out, free to parents, the essential SEN Code of Practice and the less essential but very helpful Special Educational Needs: a guide for parents. Copies of the Code (quote reference number 581/2001) and parents’ guide free from:
Tel: 0845 6022260

Sanctuary Buildings
Great Smith Street
London SW1P 3BT
Tel: 0207 925 5000

Web addresses:

Home page:
DfES/Teachernet SEN home page:
SEN Code of Practice:
English LEAs’ addresses:
English, Scottish, Welsh and Northern Irish education departments:

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Independent Panel for Special Education Advice (IPSEA)
IPSEA is a registered charity which aims to give free advice and support to parents of children classified as having special educational needs. Has a network of volunteers who can offer free independent second opinions during statementing, advice line support and representation at tribunals. Highly recommended by parents who have used it. If you want to know more, send an SAE to the address below, or check the web site. The web site contains news, legal advice and summaries of case law, downloadable model letters for use in such situations as failure to implement a statement, and an order form for IPSEA’s self-help guide to the SEN Tribunal.

6 Carlow Mews
Suffolk, IP12 1DH
Tel: 0800 018 4016 (freephone advice line)
Web site:

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Makaton – a simplified sign language

The Makaton Vocabulary Development Project
31 Firwood Drive
Surrey GU15 3QD
Web address:

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Network 81
National network of parents’ groups, offering advice and support over problems with the education of children categorised as having special educational needs. Campaigns for appropriately resourced inclusive education. National advice line, local befrienders.

1–7 Woodfield Terrace
Essex CM24 8AJ
Tel: 01279 647415 (Mon.–Fri., 10am–2pm advice line)

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Special Educational Needs and Disability Tribunal
Hears appeals by parents against LEA decisions concerning their children’s special educational needs, such as: refusal to assess; contents of statement (identification of needs, specification of provision, placement); ceasing to maintain statement. Useful to parents who can marshall evidence and present case in quasi-judicial setting, but those who are intimidated by this or who can’t manage the paperwork etc. should seek help from the Down’s Syndrome Association or IPSEA.

Well worth pursuing your case to this arena, as it is independent of LEAs and its decisions are legally enforceable. With the final statement, your LEA should send you the booklet about the Tribunal and how to appeal called Special Educational Needs: how to appeal, also available from 01325 392 555, 0845 6022260, or by email from, or downloadable at:

The Tribunal also hears cases against disability discrimination by schools and LEAs, and if a case is successful an appropriate remedy will be ordered.

English tribunal:
Procession House
55 Ludgate Hill
London EC4M 7JW
Web site:

SEN Help line: 0870 241 2555
Open from 9:00 to 17:00 Monday to Friday
Discrimination helpline: 0870 606 5750
Open from 9:00 to 17:00 Monday to Friday
Welsh tribunal:
SEN Tribunal for Wales
Unit 32
Ddole Road
Enterprise Park
Llandridnod Wells, Powys

Helpline: +44 (0)1597 829 800

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British Council of Organisations of Disabled People
A national organisation of disabled people representing 116 disabled people’s organisations. Works to promote and protect disabled people’s human and civil rights, including campaigning for comprehensive anti-discrimination legislation. Offers speakers, workshop facilitators and materials for workshops/conferences involving disabled people. Publications list, information leaflets, also individual membership.

Litchurch Plaza
Litchurch Lane
Derby DE24 8AA
01332 295551
Fax 01332 295580
Minicom 01332 295581
Information line: 01332 298288 (Mon. to Fri. 1.30pm to 4.30pm)

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The Council for Disabled Children (CDC)
Information sheets on disability, special needs and general children’s services.

8 Wakley Street
London EC1V 7QE
Tel: 0207 843 6000
Web site:

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Disability Alliance
Aims to break the link between disability and poverty by providing information and training, conducting research and campaigning.

1st Floor East, Universal House
88-94 Wentworth Street
London E1 7SA.
Tel: 0207 247 8776
Web site:

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Disability Now
Monthly UK disability news and features in paper and on the web site, plus forum on the web site.

Disability Now
6 Market Road
London N7 9PW
Web site:

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Disability Rights Commission
The Disability Rights Commission (DRC) was an independent body set up by the Government to help secure civil rights for disabled people. It advised and assisted disabled people in pursuing those rights using the provisions of the Disability Discrimination Act 1995 and campaigned to improve things. In 2007 The DRC merged into the new Equality and Human Rights Commission.

Helpline Mon, Tue, Thu, Fri 9:00 am-5:00 pm; Wed 9:00 am-8:00 pm:
Telephone: 08457 622 633
Textphone: 08457 622 644
Fax: 08457 778 878
Mail: Equality and Human Rights Commission Disability Helpline (England)
Stratford upon Avon
CV37 9BR
Web site:
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People First
Self-advocacy group of people with learning difficulties.

Web site:

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Central England People First
Another People First organisation. It works in co-operation with the UK Down’s Syndrome Association at their national conference working with people with Down’s syndrome to speak up for themselves.

Charles House
61-69 Derngate
Northampton NN1 1UE
United Kingdom
Tel. 01604 37233
Fax. 01604 603503

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Values Into Action
‘VIA is the national (UK) organisation campaigning with people who have learning difficulties (sometimes called learning disabilities, mental handicap, or developmental disabilities) to secure their rights, good services, and citizenship.’

Oxford House
Derbyshire Street
London E2 6HG
Tel: 0207 729 5436
Web site:
Email :

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If you have a child with DS, you can probably claim Disability Living Allowance (the care element applies from three months old) and may be able to claim other benefits.

The Down's Syndrome Association produces a series of leaflets on welfare benefits: see The DSA's benefits advisers can be reached Monday to Friday 10am to 4pm on:
0845 230 0372

There is also free advice available from Mencap.

Web sites recommended by parents on the UK DS list are:

Benefits Enquiry Line (government) for people with disabilities:
0800 88 22 00

Carers' rights to assessment etc.:

Carers and Disabled Children Act 2000: full text:

Links to benefits information:


For children under the age of 16:

Disability Living Allowance:
Carer's Allowance is available if you spend at least 35 hours a week looking after your child and they are receiving the high or middle rate of Disability Living Allowance:

Disabled and over 16:

Check government info at
Incapacity Benefit
Severe Disablement Allowance: (no longer available to new claimants)
Income Support:

All ages

Disabled Facilities Grant
A local council grant to help towards the cost of adapting your home to meet your needs if you are disabled. Not means tested for children under 19.

You can also contact your local Jobs Centre, Citizens’ Advice Bureau, your welfare rights office or advice shop, or one of the organizations listed below.


Carer's Allowance Unit

Palatine House
Lancaster Road
Preston PR1 1BR
Tel: 01253 856 123
Textphone: 01772 899 489
Fax: 01772 899 354

Disability Living Allowance Unit

Warbreck House
Tel: 01253 856123
0r 0345 123456 (local rate call)

The Family Fund
The Family Fund helps families of disabled or seriously ill children under 16. It gives grants and information for holidays, leisure, laundry equipment, driving lessons and more. Range of information includes benefits, holidays, transport, more. If your income is £23,000 or less they may be able to help. Apply by phone or online.

PO Box 50
York YO1 1UY
Tel: 0845 13045 42
Web site:

Independent Living Fund

PO Box 183
Tel: 0115 942 8191


National Office
123 Golden Lane
Tel: 0207 454 0454


Gate House
CM20 1HR
Tel: 01279 635666

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Disability Discrimination Acts 1995 and 2005

Guidance to the provisions of the 1995 Act can be found at:
Full text at:

See the Disability Rights Commission for advice on taking cases under the Act, and see the Special Educational Needs and Disability Act and the Codes of Practice for how the DDA applies to education.

The Disability Discrimination Act 2005 gave public bodies (e.g. schools) a new duty to promote disability equality and to draw up schemes to do so (from December 2007). Full text at:

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The 1996 Education Act
Full text of the Act can be found at the web address below. Part IV is the part which deals with special educational needs and LEAs’ and others’ responsibilities in this area. See also the SEN Regulations:

Full text of Act:
Statutory guidance on implementation of the Act and Regs is in the SEN Code of Practice:

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Children’s Legal Centre
Runs an advice service on all aspects of law and policy affecting children and young people.

University of Essex
Wivenhoe Park
Essex CO4 3SQ
Tel.: 01206 874 807 (education law and advocacy)
Web site:

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The Commissioner for Local Administration (Ombudsman)
Investigates complaints of maladministration made against local authorities, i.e. if the LA has taken too long, not followed its own rules or the law, does not do what it has committed itself to, misleads you or does not follow correct procedure in making decisions. Unfortunately, you can only complain after the event, and you have to have used all the usual routes for complaining first. But very thorough when they do investigate.

21 Queen Anne’s Gate
London SW1
Tel: 0207 915 3210

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The law on therapies and statements
See this link, Therapies and statements of special educational need (England and Wales), for a summary of the case law backing our children’s right to have adequately specified speech therapy in Part 3 of their statements and therefore its continued provision guaranteed.

Special Educational Needs and Disability Act 2001
This law, known as SENDA, was introduced to include education in the coverage of the Disability Discrimination Act. Before its implementation, educational bodies could unjustifiably discriminate on the grounds of disability within their education services with impunity, whereas as employers or providers of other services, such as leisure, they were liable to legal action. SENDA is a step forward, but is limited. The DfES has also produced statutory guidance on inclusion to accompany Part 1 of the Act.

Full text of SENDA:
Codes of Practice for schools and FE/HE:
Inclusion guidance: Inclusive Schooling – Children With Special Educational Needs:

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A wealth of health information, both research articles and down-to-earth advice on things like the permanent runny nose and toilet training, is available thanks to Dr Len Leshin at:

Note: This site is American and British guidelines are not necessarily the same. In particular, the recommendations for screening for cervical spine instability are different. This has caused confusion for some families and workers as X-rays are recommended in USA but not in Britain. The Schedule of Health Checks on the site of the Down’s Syndrome Medical Interest Group (below) under Parent Resources gives current British recommendations in a simple format and the Guidelines for basic essential medical surveillance (link from that site's home page) gives fuller details.

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Down's Syndrome Medical Interest Group
The Down’s Syndrome Medical Interest Group (DSMIG) is a network of doctors from the UK and Republic of Ireland who have a specialist interest in Down's syndrome. Their aim is to share and to disseminate to health care professionals a wide range of evidence-based and other information about the medical aspects of Down’s syndrome and to promote interest in the specialist medical management of the syndrome. The web site includes an order form for the (October 2000) UK growth charts.

Down's Syndrome Medical Interest Group
Children’s Centre, City Hospital Campus
Nottingham NG5 1PB
Tel: 0115 962 7658 ext 45667
Fax: 0115 962 7915
Web site:

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For web sites devoted to Down’s syndrome, Dr Leshin has compiled a comprehensive list at:

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Mailing lists are e-mail-based discussion groups. If you’re a member of one, you can send a message to the list address, and it’s then sent to all the other members on the list. Other members can reply directly to you or, if it’s of general interest, to the whole list. Both the lists described here are populated largely by parents or close relatives of people with DS, although there are a lot of professionals (some of whom are also parents) on the Down-syn list.

UK Downs syndrome e-mail list

For informal support, discussion and information via e-mail -- this is a list for UK topics and people and those interested in them.

To subscribe and unsubscribe to the DS-UK discussion list go to:

Or send an e-mail to:

with the phrase subscribe DS-UK in the body of the message.

Down-syn listserv/newsgroup

This is the oldest and most international e-mail list for DS, and probably has the most subscribers. It’s therefore quite busy.

To subscribe, go to the web page:

If you don’t want to subscribe to this list, you can still read messages in the archives at:

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Improve this page ...

Suggestions for additions and improvements to this page (or more pages) are welcome. Please e-mail suggestions or material you think should be included to:

First edition HTML code and document formatting copyright © 1995 by Tracey Finch.
This edition content, design and layout copyright © 1996, 1997, 1998, 1999, 2000, 2001, 2002, 2003, 2004, 2005, 2006, 2007 by Chris Gravell (thanks Tracey).
Picture of Matthew Boyd-Gravell used by permission of the photographer, Mike Boyd (thanks Mike and Matthew).
Last revised December 2007.

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