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.
February kicks off our 2025 focus to promote the importance for all our families to sign up to the GLOBAL ANGELMAN SYNDROME REGISTRY. International Angelman Day (15 Feb) is when we spread the word about our Collect Data, Create Change, initiative.
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!
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. Rare Disorders NZ has launched a petition calling for Te Whatu Ora - Health NZ to urgently begin planning implementing the Rare Disorders Strategy.
PLEASE READ & SIGN THE PETITION HERE!
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!!
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.”
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
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.
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.
