Patrizia Krieser From: Sent: To: Subject:
Patrizia Krieser Monday, 19 February 2024 4:11 pm Communications Rare Disorders NZ February 2024 Newsletter
Kia ora koutou, greetings and Happy New Year! Rare Disease Day on 29th February and our own rare disorders month during March suddenly seem very close! As always this is an important time on RDNZ’s calendar and sets the scene for our impact and effectiveness for the rest of the year. We hope that the publicity that will happen later in February and throughout March will incentivise politicians and government department officials to prioritise the things that are important to people living with rare disorders. Assisted by Professor Gareth Baynam, Medical Director for the Perth (WA) Rare Care Centre, our events will include the parliamentary launch of our White Paper reports on the Voice of Rare Disorders Survey results (one report on the overall results, and one focused on whānau Māori), a “Connecting the Dots” forum for New Zealand’s rare disorders health research community, a networking event for rare disorders support group leads, and a host of “Glow Ip and Show Up” events throughout the country. Please get involved as much as you can in as many local events as you can manage – the more involvement,
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