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As the country and world open up again, we thought it would be a good time to take stock of where we are as an organisation. TSCNZ aims...
TSCNZ NEWS
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president4609
- May 3
- 1 min
TSCNZ Newsletter April 2022
Lots of news in our latest newsletter which is out now including Te Aroha Music Festival, TSCNZ Survey, Committee News, Membership...
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TSCNZ
- Mar 8
- 1 min
Parachute Packs
Almost 200 of these wonderful, informative resources for newly diagnosed individuals and families have been sent out to families,...
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TSCNZ
- May 14, 2021
- 1 min
April Newsletter - Awareness day and online conference ...
Our April Newsletter is out. It covers a range of things including the Global Awareness day on May 15th and the Onlin e conference that...
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TSCNZ
- Dec 5, 2020
- 1 min
November Newsletter Out Now
Please see our latest MailChimp newsletter. It includes items on: Progress on Funding of Sirolimus, Research News, Global Awareness Day,...
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TSCNZ
- May 9, 2020
- 1 min
TSC Global Awareness Day - May 15
Online Awareness Campaign We hope you have come through Level 4 as well as possible. Although we are still unable to meet in person, we...
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TSCNZ
- Apr 12, 2020
- 1 min
April Newsletter
Looking at news from around the world, I am feeling grateful ...but also acknowledge that it is a very stressful time for many here also.
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TSCNZ
- Mar 18, 2020
- 2 min
Coronavirus and TSC: Information for the TSC community
Thanks to TS Australia and their medical experts for this information: We know that like everyone, our TSC community is being flooded...
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TSCNZ
- Feb 18, 2020
- 1 min
Feb Newsletter
The Feb TSCNZ newsletter is on our Resources page ... includes ... positive news from Pharmac, Sydney conference, "Fair for Rare" campaign.
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TSCNZ
- Jan 27, 2020
- 1 min
Nov Newsletter
The Nov 2019 newsletter is now up on the site - sorry for the delay. You can find it on our Resources page along with all our old...
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TSCNZ
- Jun 12, 2019
- 1 min
It's AGM Time - Followed by Dinner
All are welcome to attend the TSCNZ AGM on Saturday 15 June @ 4pm at the Owen G Glenn building in Auckland followed by a casual dinner at...
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TSCNZ
- Jun 11, 2019
- 1 min
May Newsletter
The May newsletter is now up on the site. You can find it on our Resources page along with all our old newsletters. That page has...
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TSCNZ
- Apr 20, 2019
- 1 min
Global Awareness Day 15th May 2019
We are promoting two TSC Global awareness day events here in NZ: For those who want to compete or support someone in The Nugget - Dig...
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TSCNZ
- Oct 22, 2018
- 1 min
TSC National Conference 2018
We're delighted to be able to share the links to the videos from many of the excellent presentations at the TSC National Conference 2018....
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TSCNZ
- May 20, 2018
- 1 min
JOIN US: TSC National Conference '18
An opportunity for individuals, families and professionals in the Tuberous Sclerosis Complex community to learn more about TSC from a...
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TSCNZ
- May 13, 2018
- 1 min
TSC Global Awareness Day
May 15th is the 2018 In the run-up to this event, starting tomorrow, we will be posting 15 TSC facts each day. There are also three...
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TSCNZ
- May 7, 2018
- 1 min
GOODBYE TO AN ANGEL
We are deeply saddened to hear that passed away on Monday. Tonya was one of our TSC Champions – she supported us, guided us, gave us hope...
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TSCNZ
- May 7, 2018
- 1 min
KNOW THE SIGNS
Often one of the first seizure types in babies with TSC, check out this clear, accurate video to mark infantile spasms week. These...
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TSCNZ
- May 7, 2018
- 1 min
Amazing story from Australia.
When Cynara Stalenhoef’s husband was diagnosed with a rare genetic condition that affected his kidney’s she immediately offered to donate...
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TSCNZ
- May 7, 2018
- 1 min
'TSC - hard to say, more difficult to live with
Share this video with your friends, Twitter followers, etc. We want to reach as many people as we can. TSC is a rare genetic disease...
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