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PWS New Zealand

Prader-Willi Syndrome Association New Zealand

The PWSA (NZ) was founded in 1989 and has served as an incorporated society since 1991, with charitable status since 2008. Our mission is to enhance the lives of New Zealanders living with Prader-Willi Syndrome and their families by providing advocacy, education, and support.

Key achievements include:

  • Successfully advocating for funded growth hormone therapy for children and adults with PWS.

  • Making submissions to Government ministries, Pharmac, medical societies, and in relevant consultations, to create awareness of issues faced and advocate for the needs of the community.

  • Collaborating with professionals and other agencies to improve the care and supports available, for example, working with Rare Disorders NZ to support the establishment of a Rare Disorders Health Strategy and a Centre of Expertise within national health system reforms.

  • Producing and regularly updating a wide range of free information resources which are sent to hospitals, families, schools, service providers, and to disability / health events and conferences.

  • Regularly delivering PWS training workshops to schools and residential service providers.

  • Hosting biennial national camps for people living with PWS of all ages to attend with their families or a support person.

  • Hosting age specific weekends each year on a rotational basis: for young families, for tweens / teens living with PWS and parents, for adults living with PWS.

  • Establishing an Adults Living with PWS (ALPWS) Leadership Group in 2018 who have met inperson at camps and adults’ weekends and meet regularly via Zoom. The ALPWS group set goals for what they would like the group to achieve and have worked on self-advocacy, peer support, contributed to information resources, and have recently produced videos for PWS training. In 2023, they selected their first ALPWS representative to join the PWSA(NZ) Board.

  • Providing all-hours, year-round support and advocacy as needed to families and individuals who can contact us in several ways online and via our helpline.

    PWSA(NZ) is a registered charity, CC460009, with donee status.

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