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
Landmark Wins - 2025
9 December 2025 - Family carers win landmark Supreme Court case defining them as homeworkers
The case was brought by two parents, Christine Fleming and Peter Humphreys, who each care for their severely disabled adult children, Justin and Sian, whose physical and intellectual disabilities require constant supervision and around-the-clock care.
Statement Of Peter Humphreys On Today’s Supreme Court Decision
Press Release – PSA
This case was never just about me or my whanau. It was taken on behalf of thousands of families who deliver complex care at home so disabled people can live full and meaningful lives in their communities.
(Peter Humphrey's daughter has Angelman syndrome)
12 December 2025 - IHC settlement a commitment to all students reaching their potential
The settlement commits to a Framework for Action that responds to the support needs of disabled and neurodiverse students, and establishment of a stakeholder group to support its implementation.
The framework includes:
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better data reporting and collection
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improved access to specialist support services
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better coordination among education agencies to improve the system for disabled students
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taking steps to ensure the curriculum reflects and includes all learners
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taking steps to enable more accessible infrastructure
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an investigation of alternative funding structures
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an investigation into the impacts of government policies and funding decisions on attitudes of ableism (a focus on what disabled students can’t do, rather than what they can).
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.”
