Who are we? Why do we exist?

Turner Syndrome Association of New Zealand Incorporated is a registered charity and incorporated society. The Association was founded in 1993 and was previously known as Turner's Syndrome Support Group (NZ) Incorporated.

The Association provides support to girls, women and families affected by TS. We do this by supporting individuals and families with a range of activities and educational products. The needs of TS members are diverse, because there is a wide range of possible physical and psycho/social symptoms. We support the TS community from first diagnosis (often in utero) right through to advanced old age. We publish and distribute materials that reflect the most recent research to members, families, medical specialists, health and allied practitioners.

Turner Syndrome Association of New Zealand Incorporated (TSANZI) recognises Te Tiriti o Waitangi as Aotearoa New Zealand’s founding document. TSANZI is committed to upholding the mana of Te Tiriti o Waitangi and the principles of Partnership, Protection and Participation.

Our History

In 1989 Kathy Mills who has Turner Syndrome and is a Psychologist decided to start a support group for women and girls with Turner Syndrome. Notices were sent out to all GPs in the Waikato area to pass on. This resulted in a number of events such as barbecues at homes and picnics at the Lake which were enjoyed by all.

In Jan 1990 there was an article in the Herald about Turner Syndrome which said that there was no support group so a letter was written to clarify that there was one. As a consequence contact grew from Auckland including the Growth and Development Foundation.

Following this were some busy years with a number of meetings in Auckland and Hamilton of varied forms. After a couple of years the need to become incorporated and set up proper structures became evident. This was done with the help of Gavin Garnett whose daughter has Turner Syndrome.

Turner Syndrome Support Group New Zealand Incorporated was formed in September 1993 and the first information pamphlet was prepared.

We were also in contact with a number of women in Christchurch but communication proved difficult. Kathy Mills moved over to Sydney Australia to work in about 1994, she was missed! The group ran in a limited way over the next few years. We really only sent out information to newly diagnosed women and girls.

We have strong ties to Turner Syndrome Australia. The international conference in Sydney 2003 was attended by about 6 kiwis. Conferences have also been held in Brisbane in 1996 and 2006.

In 2000 there were a group of women in Auckland wanting to restart the group. This was well supported by Waikato and we have had a number of excellent meetings. In June 2001 the rules of incorporation were altered to achieve charitable status.

A seminar day in Auckland was organised by Pharmacia August 2002. A number of excellent speakers aided the knowledge of Turners ladies.

A seminar day was organised in Hamilton in May 2005 this was well attended by about 40 people. The speakers were of high quality and presented the latest information.

There have been numerous girls attending Koru care trips and girls camp which has really benefited them.

In 2022 we updated our logo to the one you see today, combining the butterfly and a heart. The x chromosome looks like a butterfly under a microscope. We created a facebook campaign using our key phrase NZ Butterfly Warrior.

In 2022 we amalgamated with a support group in Wellington with the national charity being the main focus. This means there is only one Charity providing support across the country.

We also updated our name to Turner Syndrome Association of New Zealand Incorporated.

In 2023 we co-hosted the TS Summit, a 3 day conference in Wellington with Turner Syndrome Australia. Dr Claus Gravholt, a world expert in Turner Syndrome, speak to our members. 

In 2023 we saw a huge growth in our membership numbers, with now over 85 members being part of our charity. 

We have seen in recent years updating of our Constitution to keep up to date with new legal and regulatory requirements, new policies and procedures and an update of this website. 

We have a new strategic plan coming. Good things are coming ...


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