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PRODID:-//Prader-Willi Syndrome Association NZ - ECPv4.9.4//NONSGML v1.0//EN
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X-WR-CALNAME:Prader-Willi Syndrome Association NZ
X-ORIGINAL-URL:https://www.pws.org.nz
X-WR-CALDESC:Events for Prader-Willi Syndrome Association NZ
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TZID:"Pacific/Auckland"
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TZOFFSETFROM:+1300
TZOFFSETTO:+1200
TZNAME:NZST
DTSTART:20190406T140000
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DTSTART:20190928T140000
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20190228
DTEND;VALUE=DATE:20190301
DTSTAMP:20260417T213029
CREATED:20190214T225805Z
LAST-MODIFIED:20190228T044747Z
UID:5452-1551312000-1551398399@www.pws.org.nz
SUMMARY:Rare Disease Day 2019
DESCRIPTION:February 28th is international Rare Disease Day\, an opportunity to raise awareness and educate people about the thousands of rare conditions that affect more than 377\,000 New Zealanders. \nWHAT CAN YOU DO? \nShare for Rare. \nHost a morning or afternoon tea\, or set a date / choose a venue and invite friends\, family and colleagues to come along\, show support and make a donation. Use rare ingredients\, wear unusual outfits…! Contact NZORD if you would like copies of the poster above: comms@nzord.org.nz \nShare stories via social media. You might want to share personal stories or the stories of Sarah\, Evie\, Preston and Jethro which can be found on the NZ rare disease day website. \nChange your profile pic or cover photo – download profile pics\, banners etc from this page on the international website. \nYou may also want to share the following stories about living with PWS: \n\nShare Noel’s PWS diagnosis story\, written for Rare Disease Day 2016.\nShare Pia’s story about her teenage daughter\, Olivia\, who has PWS\, written for EURORDIS\, the European rare disease alliance\, in 2015.\nShare Rebecca’s story about her son\, Kieran\, who has PWS\, written for The Mighty about Rare Disease Day 2016.\nShare Jennifer’s story about her son\, Nolan\, who has PWS\, written for the Global Genes in 2012.\n\nWatch Maria Picone’s video about how she was inspired to set up TREND to further knowledge about PWS in our community. \nShare this video where Maria talks about how her daughter’s diagnosis of Prader-Willi syndrome inspired her to start TREND Community\, which helps other families also affected by rare disease. It is an important message about how vital the sharing of information is within and amongst rare disease groups. \nJoin TREND and help turn your anecdotes into evidence.  \nWatch this video to find out more. Go to the TREND website here. \nJoin the Global PWS Registry \nThe purpose of the PWS Registry is to enhance the understanding of the full spectrum of PWS characteristics.  The registry will also accelerate the completion of studies and clinical trials\, plus determine areas of needed research and treatments. \nRegister to provide details on topics such as as developmental milestones\, scoliosis\, medications\, appetite\, behaviour and other clinical symptoms. \n
URL:https://www.pws.org.nz/event/rare-disease-day-2019
CATEGORIES:Events
ATTACH;FMTTYPE=image/jpeg:https://www.pws.org.nz/wp-content/uploads/2019/02/nzord-rdd.jpg
ORGANIZER;CN="NZORD":MAILTO:enquiries@nzord.org.nz
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