International Links
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The PWSA(NZ) is a member of the International Prader-Willi Syndrome Organisation (IPWSO) with representative professional, parent and caregiver delegates:
Professional Delegate: Prof Paul Hofman, Paediatric Endocrinologist and researcher at The Liggins Institute, University of Auckland
email: p.hofman@auckland.ac.nz
Parent Delegate: Karen O’Reilly
email: oreillynz@outlook.com
Caregiver Delegate: Julie-Anne Quinney
email: Julie-Anne.Quinney@spectrumcare.org.nz
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The PWSA(NZ) supports the work of the Foundation for Prader-Willi Research (FPWR) by helping to raise funds for research via one of our Givealittle pages and encouraging our members to join the Global PWS Registry. The registry is a database of patient information which aims to enhance understanding of PWS, guide standards of care andĀ help identify areas of need.
We also support Prader-Willi Syndrome Awareness Month during May which has been an official national awareness month in the USA since 2010.
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We work with the Prader-Willi Syndrome Association of Australia (PWSA) and other Associations in the Asia-Pacific region to co-organise the Asia-Pacific PWS Conference held every three years. We also support Go Orange for PWS Day, an awareness initiative of PWSA VIC, the state branch for Victoria.
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We are also keen to support the work of the Prader-Willi Research Foundation of Australia by helping to raise awareness of and support for research projects in Australia, as well as those in New Zealand.