The New Zealand Down Syndrome Association (NZDSA) was formed 30 years ago ‘promote the participation of people with Down syndrome in their community’.

The association’s aims are to:

  • inform and support families/whanau of people with Down syndrome
  • promote and advocate for positive attitudes in the wider community
  • further the understanding of Down syndrome
  • promote the rights and inclusion of people with Down syndrome
  • review policies and lobby Government and other institutions
  • promote positive public awareness through educational and media initiatives

What does it do?

The Down Syndrome Association offers support and information to families/whanau whose lives have been changed by Down syndrome. It also offers this service to schools, health professionals, hospitals, training colleges and anyone requiring information about Down syndrome.

They have a quarterly magazine that is sent to all of their members; they have a website and an 0800 number.

In particular the NZDSA is established to:

  • Promote the welfare of people with Down syndrome and their families/whanau
  • Provide up to date information that is accessible to families/whanau particularly new parents and other interested parties
  • Publish a quarterly magazine
  • Provide information to medical practitioners, students, educators and community organisations, to enhance their interactions with people with Down syndrome
  • Provide ongoing links with and among families
  • Establish and maintain relationships with other disability organisations
  • Respond to political and social issues by making submissions to government bodies and through the media
  • Initiate and manage projects that will have a direct benefit to people with Down syndrome and their families
  • Maintain links with international Down Syndrome Associations to ensure flow of current knowledge and information
  • To do any other legal and lawful acts to attain these objectives and conducive to our mission statement

How is it funded?

The association is funded by charity grants with a very small percentage coming from membership fees.

How can I get their help?

Phone 0800 693 724 and press 1 – this will get you information and support from our National Executive Office; or press 3 and you will be put in touch with the regional contact person in the area from which you are calling.

You can also email

How much does it cost?

  • Membership is $30 per year for families/whanau, friends or any person with Down syndrome over the age of 18; or
  • An Affiliate fee of $50 for corporations, organisations, school or people with a professional interest in Down Syndrome.

Link to the Down Syndrome Association Website

This bright website provides information about Down syndrome and a welcome for new parents of a child with Down syndrome. The page for new parents includes the assurance that though their life is no longer following the expected route, they are not alone, and they can be helped to celebrate their baby’s life. There are details about the health of Down syndrome children including appropriate growth charts. Parents and families share their stories on the Down Syndrome Associate Twitter and Facebook pages.

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This information was compiled by the Kiwi Families team.

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