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International Angelman Day

The global Angelman Syndrome community celebrates INTERNATIONAL ANGELMAN DAY (IAD) annually on the 15th February,  to raise awareness worldwide for Angelman syndrome and to raise funds for national AS organisations. The date selected is in recognition of the 15th chromosome affected, and February is international Rare Disease month. The official website for IAD and generic IAD resources, can be found at: www.angelmanday.info

The Purpose of International Angelman Day is to:

  • Raise awareness worldwide of the condition

  • Mobilise people to action & encourage fundraising for the AS organisation in their country

  • Promote research and educational resources in the organisation’s own country

  • Remember those people with Angelman Syndrome who are no longer with us

IAD 2025

We're excited to announce our

Collect Data, Create Change! campaign

for February & March!

We kick off on Feb 1st, with a FREE, exclusive NZ family webinar 

'DATA TODAY, TREATMENT TOMORROW'

with Meagan Cross (CEO FAST AU)

Hear all about the Global  Angelman Syndrome Registry; 

why we have one, how to sign up, and what treatments are currently in the pipeline. 

To register, please email angelmannetwork@gmail.com

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STEP 1: Collect Data - IAD SIGN UP CHALLENGE!

This February, we are challenging ALL families affected by Angelman Syndrome (AS) in Aotearoa New Zealand, to sign up to the Global Angelman Syndrome Registry!

Why is this important? Aotearoa NZ currently lacks a national registry for rare disorders so we don't know how many Kiwis live with Angelman syndrome.

 

Signing up to the Global AS Registry will give us more accurate data to ensure that people with AS in New Zealand will have access to potential treatments down the road. This global initiative also helps to drive research & inform clinical trials.

 

Please help us shape the future of treatment for Angelman Syndrome in Aotearoa NZ! Every person with Angelman syndrome who joins the registry, helps to pave the way for future treatments in Aotearoa NZ !!

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 STEP 2: Collect Data - SEARCH & RESCUE!

Inspired by the FAST Search & Rescue initiative, we’re asking everyone in Aotearoa NZ to reach out into your communities to find individuals with Angelman Syndrome who are not yet part of our national network. There are many more out there - let's see how many we can find? Together, this data will create change!

Here’s how you can help (Resources coming  soon!):

  1. Spread the Word: Share information about the Global Angelman Syndrome Registry within your community - through your local paper, social media, local groups, community/school/church newsletters, medical teams, or word of mouth.

  2. Connect with Families: If you know of a local family or individual who is affected by Angelman Syndrome, reach out to them and encourage them to join the registry.

  3. Provide Support: Offer assistance with the registration process if needed, to ensure that everyone can join up regardless of cultural, language, or technological barriers.

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We will keep a weekly tally of the numbers who join during February & March! 

Connecting Families, Inspiring Hope

Gatherings: International Angelman Day 2025

The Angelman Network is a supportive, whanau-driven community dedicated to bringing families together. By encouraging and promoting local family gatherings & events across the motu, we create a space where individuals with Angelman Syndrome and their loved ones can connect, share experiences, and find strength in unity.

 

If you are seeking and/or planning an event for IAD 2025, please contact us!! We'd love to know what youre doing, and will share this on our social media. 

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IAD 2024
See new IAD website for info and resources

For IAD 2024, we encouraged all families to help raise awareness about Angelman syndrome in your own local community; reach out, get others on board, and make it fun! Get together with other Angelman families for social gatherings, share some kai, hold a BLUE mufti day at school or your workplace on 15th Feb to help raise funds for TAN, light up your homes BLUE, and approach local media to write articles about your activities, events or fundraisers.

 

Thank you TO ALL our amazing FAMILIES AND WHANAU, who made such a great effort this year to 'shine a light' on Angelman syndrome in your own communities !!

IAD 2023
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IAD 2023 - Collaborative webinar with The Angelman Network, FAST & ASF. Two 1/2 hr sessions:

  • Roadmap to a Cure 2.0 (FAST) - with Allyson Berent-Weisse and Nycole Copping 

  • AAC Q & A session (ASF) - with Amanda Moore and Communication specialist, Tabi Jones-Wohleber

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2022

Online Campaign

Due to ongoing outbreaks of Omicron in NZ, families could request a free laminated AAC page ( created by the Angelman Academy) to be posted out for IAD 2022. Social media banners and posters were personalized and shared on various platforms.

An amazing celebrity Shout-out video was circulated for all the folk in NZ who have Angelman syndrome -  from Nickson Clark (The Edge Breakfast team) in honour of his cousin, Jordan. Featuring tributes from Chris Parker, Sharyn Casey, Lance Savali, Buttabean, Bree and Clint ZM radio, Pirie Weepu, and Johnny Tuivas-Sheck. 

2021

Family Gatherings

Families gathered in Auckland (North Island) and Christchurch (South Island)

AUCKLAND: at Glen Eden Community House, Glen Eden. A pot luck lunch, wearing blue. Playground and kitchen available. 

CHRISTCHURCH: Sunday 14th Feb at 5 Tisch Place, Christchurch.  Shared lunch.

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2020

IAD Family events

Events held in Palmerston North, Christchurch and Auckland. Many thanks to BestStart Marne (Palmerston North) - they organised a great fundraiser and Angelman awareness event with options to run/walk 5 or 10km. A family picnic was held in Christchurch and in Auckland at Orewa Beach - with Circability providing free entertainment,

2019

Auckland Event

International Angelman Day Event, Auckland, Sat 16th Feb at Papatoetoe Primary School. The Angelman Network was very grateful to have the Hon. Carmel Sepuloni, Minister for Disability Issues, attend as guest speaker - to meet our families and share information on some positive changes coming up soon for the Disability sector.

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2018

Family Gatherings

Family gatherings were held in Auckland (North  Island), Palmerston North (Lower N Island) and Christchurch (S. Island). In Christchurch, families  enjoyed time together at the Southern Centre, exploring the sensory room and enjoying the swim school pool. 

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2017

Family Gatherings

Eleven Auckland families gathered together to enjoy the Trillian Trust FunFest held during the summer school holidays. The accessible location, free activities, rides and attractions on offer, made it a very special treat for our families.

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2016

Auckland Event

The theme was Love & Inclusion at the IAD event held at  Estuary Arts Centre, Orewa on the 14th Feb. Hermant Thacker shared his research work on adults with disabilities and family care, and Natalie Todd spoke on the AGOSCI 2015 conference and AAC.

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2015

Auckland Event

The Angelman Network had a stand at the Okura Forest Festival, North shore, Auckland - on 14th Feb, Valentine’s Day.  Our  theme was 'Awareness Eyes'. The live music festival was a super backdrop for our awareness campaign. Folk could decorate a mask, learn more about AS, and make a donation.

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2014

The theme was 'Networking for AS'. 'For The Angels' team organised an Enduro-Challenge at the University of Auckland Health and Fitness Centre, in Auckland. The challenge was a fundraiser for The Angelman Network and included a sausage sizzle. It was a fun event; a win-win for everyone who attended.

2013

The Angelman Network observed the inaugural International Angelman Day in New Zealand on 15th February 2013. It was celebrated across the country in a variety of creative ways. An event was held at PHAB, Takapuna. 13 Angelman-families and whanau were represented.

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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.

©2025 The Angelman Network

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