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NEWS

2025 is going to be an epic year for our Angelman community in Aotearoa NZ!! Keep up with the latest news here, or follow our FB page. 

The February focus is on promoting the GLOBAL ANGELMAN SYNDROME REGISTRY - and we'll be using IAD as an opportunity to spread the word nation-wide about our Collect Date, Create Change, initiative. Rare Disease Day (28 Feb) kickstarts Rare Disorders Awareness Month during March, in Aotearoa NZ! 

 

March - Rare Disorders Month

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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.

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GLOW UP & SHOW UP CAMPAIGN

The annual "Glow Up & Show Up" campaign 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. 

Sky Tower Lights For Rare Disorders!! - 30 March

Auckland Harbour Bridge lit up in support of rare disorders on 30 – 31 March. What a great way to mark the conclusion of Rare Disorders Month in Aotearoa!!

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Mahurangi Matters -3rd March 2024

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.”

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01/02/2025

Data Today, Treatment Tomorrow

NZ Family Webinar - FREE

Presented by Meagan Cross, CEO of FAST AU​

We want to encourage ALL our kiwi families to attend!  From the comfort of your own home, hear first-hand all about the Global Angelman Syndrome Registery - and the reasons why our main focus this year is to collect data for Aotearoa NZ!
To register, please email: angelmannetwork@gmail.com

15/02/2025

Collect Data, Create Change!

For International Angelman Day 2025, our focus is the REGISTRY SIGN-UP CHALLENGE!!  We have no accurate data on AS in Aotearoa NZ, and intend to go all out to GROW our numbers on the Global Angelman Syndrome Registry. More info at IAD events.

We encourage families to enjoy local gatherings across the motu, to celebrate this global day together! Please contact us so that we can promote your event and support you in any way we can. 

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24-28/02/2025

Rethinking AAC & AAC Practice

Presented by: Erin Sheldon and Dr David Niemeijer

A 4-hour workshop hosted by ATANZ - suitable for SLPs, OTs, and school AAC coaches. Whānau and clinical students are also welcome.

Workshops to be held at 4 venues across the motu! If you are able to attend, we encourage you to make the most of this amazing opportunity! Whanau fee will be reimbursed by TAN.

28/02/2025

Rare Disease Day

LIGHT UP FOR RARE!!
February is a busy time for New Zealanders and the Government alike, as we settle back into business after summer. This is why the RDNZ Alliance has chosen the month of March for Rare Disorders Month, kicking off on the last day of February - Rare Disease Day. As a member of the RDNZ Alliance, The Angelman Network encourages all our families & whanau to support this collective initiative. 

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STAY IN TOUCH ON SOCIAL MEDIA

Social media platforms are used to:

  • Connect families around the world

  • Raise global awareness for Angelman syndrome/all rare conditions

  • Share new research information

  • Encourage open discussion forums for new therapeutics

  • Gather general & specific data and information

  • Advocate for treatments

  • Fundraise effectively

  • Help find participants for trials

          and much more….

See Social Media

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The Angelman Network is a

Registered Charitable Trust based in New Zealand

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angelmannetwork@gmail.com

Disclaimer: Links to other Internet sites are for the convenience of all web-users. The Angelman Network is not responsible for the availability or content of these external sites and we do not endorse, warrant or guarantee any products, services or information that may be offered at these sites.

Always contact your own medical practitioner for any medical advice.

Information about Angelman syndrome and genetics in general is a very fast moving area and while the information on this website is regarded as the best at the time of publication, some facts may change later.

©2025 The Angelman Network

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