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!
RECENT NEWSLETTERS
What's On
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
Rare Disorders NZ -
Making Progress
The Angelman Network is an active member of the Rare Disorders Collective
23 October 2025 - after public consultation and additional input from Rare Disorders NZ, Pharmac updated its definition of a rare disorder to align with the definition in the Rare Disorders Strategy.The new definition will enable Pharmac to assess more rare disorder medicines earlier in the process as the rare disorder policy principles allow Pharmac to assess funding applications before an application has been made to Medsafe for regulatory approval.
11 November 2025 - Rare Disorders NZ attended a roundtable meeting in the Minister of Health's office with the Ministry of Health/Manatū Hauora, Health New Zealand/Te Whatu Ora, Pharmac/Te Pātaka Whaioranga, and the Health Quality & Safety Commission/Te Tāhū Hauora - to discuss an implementation plan for the Rare Disorders Strategy. All four outcomes RDNZ requested, were achieved:
a) Leadership and Oversight
b) Implementation Planning
c) Ongoing Coordination
d) Accountability and Reporting
March - Rare Disorders Month
First Rare Disorders Cross Party MP Working Group
The establishment of the new Cross-Party Parliamentary Group on Rare and Undiagnosed Disorders (CPGRD) was recently announced. This group of MPs across the political spectrum will work collaboratively to support initiatives that enhance equity, wellbeing, and social inclusion for people living with rare or undiagnosed disorders, and their families.
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.
Mahurangi Matters -3rd March 2025
Day shines light on rare disorders
“As a member of the Rare Disorders NZ collective, we support the urgent call for an immediate action plan in the new health system to implement the Rare Disorders Strategy.”
