About Down Syndrome International
With 80% of the world’s population living in developing countries, around 7 million people with Down
syndrome are living in extreme poverty without the infrastructure, cultural understanding, community
support, opportunities or finances to lead full, rewarding and healthy lives.
Down Syndrome International (DSi) is a federation of international organisations and individuals committed
to raising the quality of life and human rights for people with Down syndrome through advocacy and
empowerment.
DSi was originally founded in 1993 and registered as a UK charity in 2002. In 2009 it moved to offices in
Teddington, England at the former home of pioneering Victorian Physician Dr John Langdon Down, after
whom Down syndrome is named. By building on the momentum created by the UN Convention on the
Rights of Persons with Disabilities (CRPD), our mission is to improve the lives of people with Down
syndrome by increasing awareness of their abilities and talents and by promoting their inclusion in society.
This philosophy is carried out in practical ways by our dedicated Board of Directors from many different
countries, who collectively strive to improve resources and information sharing worldwide.
DSi’s Principal Aims
To provide information, resources and bespoke support to networks and Down syndrome groups in
countries where there is little financial or government input, with a focus on education, healthcare,
social opportunities and employment;
To raise awareness and knowledge of the condition and how people with Down syndrome live and
form part of their communities around the world;
To encourage communication and co-operation within the global Down syndrome community,
including those concerned with scientific research;
To provide a global voice for Down syndrome in the context of the international disability community
and the UN Convention on the Rights of Persons with Disabilities.
DSi Outreach in Libya
In late 2007, BG Group Libya (BGL) approached DSi in respect of the Libyan Down Syndrome Association (LDSA), a nongovernmental, membership led organisation originally started by a few parents of children with Down syndrome. Their core philosophy
is a belief in the right to a fulfilling life for all people with Down syndrome.
In May 2008, 2 DSi Board members undertook a 4 day visit to Libya to meet BGL and LDSA, carrying out an initial needs analysi s and
then reporting their findings to the DSi Board. Then in early 2009, a team of 5 specialists from DSi returned to Libya to meet BGL and
LDSA. The team initially delivered workshops on various disciplines and then, following feedback from LDSA and lengthy discussions
with all the stakeholders, undertook more bespoke presentations to meet the needs of the people in attendance.
On their return from Libya, the DSi team put together a detailed report setting out a number of Key Recommendations for LDSA. The
recommendations aimed at building on the good work the LDSA had already done and ensuring that they can develop into a robust
and informed organisation in the future, providing sound advice and assistance to people with Down syndrome, their families and all
other people in Libya with an interest in Down syndrome.
Objectives
In order to achieve our aims we have identified 6 objectives in our 5 year plan to put into action:
Objective 1: Organise and promote the World Down Syndrome Congress (WDSC) every 3
years in collaboration with the local organising committees and to co-sponsor other local
and regional conferences and programs on specific issues.
The 11th WDSC will be held in Cape Town, South Africa in 2012. Other local and regional conferences and programs
will be primarily aimed at developing countries and regions where our support is most needed.
Objective 2: Develop an international Scientific Advisory Research Group (SARG) to
support WDSC and DSi.
The SARG was set up following the 10th WDSC in 2009. Their aim is to develop an international research agenda,
formalise links with other research groups and to announce and promote WDSD Awards for those involved in scientific
research of issues connected with Down syndrome and our understanding of the condition.
Objective 3: Develop outreach programmes to bring expertise and assistance to countries
and regions where our support is needed.
DSi successfully completed its first Outreach Programme in Libya in 2008/9. DSi will develop this model through
liaison with local Down syndrome organisations, regional bodies such as those in the Asia Pacific and Africa, and
organisations such as the United Nations, World Health Organisation and Inclusion International, to put more
international outreach programmes into action.
Objective 4: Provide a web site (www.ds-int.org), email distribution list and publications to
promote international discussion and collaboration.
The DSi website has been upgraded and re-structured to provide a starting point for people and organisations with an
interest in Down syndrome to communicate with others on a local, national and international basis.
Objective 5: Promote World Down Syndrome Day (WDSD) on 21st March each year, to
encourage worldwide participation in celebration of this event.
DSi started WDSD in 2006 and since then awareness has spread throughout the World. People and organisations in
many countries have earmarked this day and have organised events and fundraising initiatives in many forms and on
a varied scale.
DSi would like this to continue and the website http://www.worlddownsyndromeday.org provides a forum for people
and organisations to showcase the work they are doing to raise awareness on and around 21st March.
From 2010, DSi will also be announcing WDSD Awards each year in the voluntary, professional and scientific
categories, for people or organisations that stand out in terms of achievement in strengthening and enriching the lives
of people with Down syndrome or furthering scientific advancement of Down syndrome.
Objective 6: Actively seek funding to assist in meeting the above goals.
DSi relies almost entirely on voluntary donations and membership fees to finance its work and in many cases, DSi
sponsors membership of organisations who have limited financial means.
In order to meet our objectives, DSi has set up a professional office and secretariat in London, UK with a staff
employed to manage the organisation, raise the profile of DSi in the international community, increase the
membership, and seek funding to meet our objectives.