Events | TSCNZ

UPCOMING Events

We're very excited to announce that
Prof Petrus de Vries & Dr Lucas Gutiérrez Lafrentz will be giving a short talk on the TAND Toolkit App at the TSCNZ AGM which is on

Monday 17th August at 7.30pm

If you'd like to attend, please email info@tsc.org.nz to receive a Teams meeting link

Families from 18 countries have joined the TANDem-2 study so far, let's put New Zealand on the map!

More about TANDem-2 here

TAND (TSC–Associated–Neuropsychiatric–Disorders) includes (among other things) behaviour, intellectual disability, autism, learning difficulties and mental ill health.

TSCNZ Annual general meeting 2026

The Annual General Meeting of the Society will take place online at 7.30pm on Monday 17th August 2026

All TSCNZ members are welcome to join us.

If you'd like to attend, please email info@tsc.org.nz to receive the agenda

and a link to the Teams meeting

Nominations for Office Holders:

President - Helen Willacy, Secretary - Tom Maling, Treasurer - Rob Mitchell

TSCNZ family conference

8th May 2027, ChristchurcH

The next TSCNZ National Conference will be held in the Garden City on the 8th May 2027

If you're thinking of joining us, please take our survey to express your interest in attending

and tell us your priority topics for speakers.

We look forward to seeing many of you there!

See how you can help below

Our conferences are for people affected by TSC, their families and caregivers.

They are an opportunity to hear from expert speakers, meet each other and share experiences.

Speakers will include specialist health professionals, researchers and experts with lived experience. We will also hold small group discussions where families can discuss issues that affect them.

In 2027, we aim to focus on:

Health and wellbeing of children and adults with TSC (e.g., dental care, neurological impacts, development and mental health)
Services for children and adults with TSC (e.g., genetic testing & counselling, day centres & respite, transition from child to adult services)
Carers for people with TSC (e.g., legal planning, advocacy, coping and self-care)

Here's some feedback from attendees at our 2023 conference:

"Lots of great presentations"
"What a total eye opener"
"Getting to meet other parents of TSC kids."
"Helpful, relevant."
"New info on progress for TSC sufferers."
"Being able to meet other people/families going through the same journey."

Conference sessions will be professionally filmed to create resources that will be available to all on our YouTube channel - check out the videos from our previous conferences here: https://www.youtube.com/@tuberoussclerosiscomplexnz5927/videos

Watch this space and keep an eye out for updates in Newsletters as we finalise the details for the conference.

Click here to take the TSCNC Conference Survey

How can you help?

We would really appreciate ideas about venues, speakers, funders and any other local knowledge.

Please email info@tsc.org.nz if you have any suggestions.

We rely on donations and small grants to run our conferences.

We've received generous donations towards the conference from Industrial Tube and AFT Pharmaceuticals,

and we're working hard to apply for funding to cover venue hire, catering, videography and travel grants.

Any support you can give us to put on a successful conference would be much appreciated,

and there are many ways to do this!

Look out for a survey from us to express interest in attending & let us know what you want from the conference.
Follow and engage with our social media pages (see here for all the links).
Subscribe to our YouTube channel and watch, share, like or comment on videos from our previous conferences, so we can demonstrate their value.
Join us in Auckland on 18th July for our FundRaver at Northern Line Bar & Social - DJs, food & cocktails (free entry).
Fundraise or make a donation for the conference using our dedicated Givealittle page
- Download our conference fundraiser flyer here

HowYouCanHelp

Conference2027

Coffee catch-up in Christchurch

October 11 from 10.30am

TSCNZ President Helen Willacy will be at Terra Viva Cafe, 242 Roydvale Avenue, Burnside, Christchurch from 10:30am on Saturday 11th October and would love to meet up with Canterbury based individuals and families living with TSC for a coffee and a chat.