Frequently Asked Questions

Disclaimer: All contents on this page are from http://www.ds-int.org/information – links will be going to their website

What is Down Syndrome

Down syndrome is a naturally occurring chromosomal arrangement that has always been a part of the human condition, being universally present across racial, gender or socioeconomic lines, and affecting approximately 1 in 800 live births, although there is considerable variation worldwide. Down syndrome usually causes varying degrees of intellectual and physical disability and associated medical issues.

Down Syndrome - What To Say (And What Not To Say)

When speaking about issues relating to Down syndrome in a way that is both factually accurate and inoffensive to the general public, including people with Down syndrome and their families, please consider our resource document:

Down Syndrome – What To Say (And What Not To Say) (PDF file download)

We are sure you share our concerns so please take a minute to check that your copy is in line with our language guidelines and that you are not perpetuating any myths about the condition.

For Parents/Carers

If you are a parent or carer of a person with Down syndrome, you can find helpful information in the following pages:

Being Pregnant

New Parents

Age 0-3

Age 3-5

Age 5-8

Age 8-12

Age 13-18

Adults 18+

For Family/Friends

If a family member or friend of the family has recently given birth to a baby with Down syndrome, the following publication may be of use:

If have any questions please contact our International Office.

Information for Siblings

We understand that sometimes your experiences as a sibling might be a little different to that of your friends, classmates or work colleagues.

Growing up with a brother or sister with Down syndrome can be a mix of good and bad experiences and emotions. Many siblings say their brother or sister with Down syndrome has made their life better. All siblings, however, sometimes need a little extra understanding and support. The following publication may be of use:

If have any questions please contact our International Office.

Other Resources:

For Professionals


If you come into contact with people with Down syndrome and their families, please take a look at the relevant pages of our website:



Social Care

If you have any questions, please contact our International Office.

For People with Down Syndrome

As a person with Down syndrome, we aim to represent you and we hope you agree with our mission and the work we are doing to achieve it.

We value your input and we want to build an organisation which is truly representative of people with Down syndrome worldwide. So why not join DSi?

You will receive free lifetime membership and you can join as an Affiliate member or as a Representative member.

The only difference between these is that Representative members are able to join our Committee of Persons with Down Syndromeand advise the DSi Board of Trustees on the direction and future of DSi. But, to qualify for this, you must already represent people with Down syndrome in your country, for example on a national self-advocacy committee.

For more information on joining DSi and how you can help improve quality of life and human rights for people with Down syndrome, visit our Join DSi page.

United Nations Convention on the Rights of Persons with Disabilities (CRPD)

The United Nations (UN) Convention on the Rights of Persons with Disabilities (CRPD) was adopted by the UN General Assembly on 13th December 2006 and came into force on 3rd May 2008.

The purpose of the Convention is to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity.

The Convention was adopted as a response to the fact that although pre-existing human rights conventions offer considerable potential to promote and protect the rights of persons with disabilities, this potential was not being tapped. Persons with disabilities continued being denied their human rights and were kept on the margins of society in all parts of the world.

The Convention sets out the legal obligations on Member States to promote and protect the rights of persons with disabilities.

It was also a response to an overlooked development challenge; approximately 10% of the world’s population are persons with disabilities (over 700 million persons), approximately 80% of whom live in developing countries.

Principally the Convention recognises that persons with disabilities have inherent rights, and that they are capable of claiming those rights and making decisions for their lives based on their free and informed consent as well as being active members of society.

To date the Convention has 155 signatories and has been ratified by 127 countries (as of 24 January 2013).

Down Syndrome International (DSi) has actively campaigned for and supported the UN Convention for a number of years and continues to do so.

We are also a member of the International Disability Alliance (IDA) whose mission is to advance the human rights of persons with disabilities as a united voice of organisations of persons with disabilities utilising the Convention on the Rights of Persons with Disabilities and other human rights instruments.

IDA works to increase knowledge and capacity among IDA members and national Disabled People’s Organisations (DPOs) on the implementation of the CRPD and the effective use of the UN system to support regional and national advocacy efforts. DSi President Vanessa dos Santos is a member of IDA’s Governing Body.

Useful Links:



Please review the following sections for further information:

Research News

A summary of recent stories concerning scientific research and research news related to Down syndrome.

Research Links

A link to a very useful summary of recent research References and Abstracts and some links to organisations concerned with research related to Down syndrome.

Scientific Advisory Research Group (SARG)

Information on Down Syndrome International’s Scientific Advisory Research Group (SARG).


Details of DSi’s formal collaboration agreement with the International Association for the Scientific Study of Intellectual and Developmental Disabilities (IASSIDD).

International Journal of Down Syndrome

Details of this interdisciplinary journal devoted to advancing knowledge on Down syndrome, covering all areas of medical, behavioural, educational, and social scientific research.

WDSD Scientific Awards

Awards presented for contribution to scientific advancement related to Down syndrome, to be presented on World Down Syndrome Day each year (21 March).