Kia ora Angelman whanau and friends,

Please register your interest in attending this zoom by sending an email to angelmannetwork@gmail.com - so that we know who/how many to expect. Please include the following:

1. Parent/guardian's names, address and contact details

2. Name, gender, genotype and birthdate of family member with AS

Then use the link below to join the zoom meeting.

You are invited to a scheduled 40 minute Zoom meeting.

Topic: TAN whanau update

Time: Jul 26, 2024 07:30 PM Auckland, Wellington

Join Zoom Meeting

https://us05web.zoom.us/j/88658149406?pwd=FBdRLWZOh0LDeVa7ueQ5MVinxltT4g.1

Meeting ID: 886 5814 9406

Passcode: 16Z0AM

We hope you can all make it! Looking forward to catching up with everyone.

Aroha nui,

Ursula Christel

Chairperson, TAN Board

angelmannetwork@gmail.com

021-1382878

 TAN CONTACT LIST UPDATE

More about this on Friday 26th! 

We need to find as many people with Angelman syndrome in NZ as possible!

Now is the time to:

1. Update the contact list

2. Proactively seek out people with AS who may not be on our current database

The July Zoom meeting will be informal. It will give us the opportunity to:

1. explain the NZ Rare Disorder Strategy and proposed Centre of Expertise for all rare disorders in NZ (proposed by RDNZ)

2. explain options for an AS Clinic, and options for our own AS registry

3. get feedback from families, and answer any questions.

    

 Hope to see you all next Friday!

Did you know that The Angelman Network (CC46746) is a registered Charity in NZ?

You can help to support our cause, by contributing a donation to our Givealittle Page here.

Or make a direct bank transfer to:

The Angelman Network Trust - ANZ Bank  06-0817-0352270-00

All donations are gratefully received.

angelmannetwork@gmail.com

021-1382878