NEWS
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February kicks off our 2026 focus to promote the importance for all our families to sign up to the GLOBAL ANGELMAN SYNDROME REGISTRY.
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International Angelman Day (15 Feb) is when we spread the word about our Collect Data, Create Change, initiative.
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Rare Disease Day (28 Feb) is the start of Rare Disorders Awareness Month during the whole of March, in Aotearoa NZ!
Both these nation-wide initiatives focus on working together to achieve the best outcomes for our families and loved ones with AS, living in Aotearoa NZ.
Please join us on this journey! We can't do this without your input and support.
RECENT NEWSLETTERS
2026 NEWS
The Purpose of International Angelman Day on 15 February, is to:
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Raise awareness worldwide of the condition
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Mobilise people to action & encourage fundraising for the AS organisation in their country
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Promote research and educational resources in the organisation’s own country
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Remember those people with Angelman Syndrome who are no longer with us
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March - Rare Disorders Month
The Angelman Network is an active member of the Rare Disorders Collective
Another glowing Rare Disorders Month
New genomics pilot project answers call for improved access to early and accurate diagnosis
Launch of the Rare Disorders White Paper
11th March: RDNZ presents White Paper at parliament, Wellington.
The Minister of Health, Hon Simeon Brown, spoke at the launch. He acknowledged the challenges people living with rare disorders face. He also spoke of the government's intention to to more. There were over 100 attendees, including support group leads from around the country, MPs, health officials, researchers, clinicians, industry representatives and partner organisations.
12 March: RDNZ Group Leads brunch, Wellington
23rd March: Rare Disorders Research Conference, Auckland.
GLOW UP & SHOW UP CAMPAIGN
The annual Rare Disorders Month in March launched by Rare Disorders New Zealand, aims to raise awareness and support for the 300,000 Kiwis living with rare disorders. Together, we to shine a light across the motu, on the urgent need for better healthcare and wellbeing for the 'rare' community.
