UPCOMING Events
TSCNZ family conference
May 2027, ChristchurcH
The next TSCNZ National Conference will be held in the Garden City in May 2027
We look forward to seeing many of you there!
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:
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Health and wellbeing of children and adults with TSC (e.g., dental care, neurological impacts, development and mental health)
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Services for children and adults with TSC (e.g., genetic testing & counselling, day centres & respite, transition from child to adult services)
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Carers for people with TSC (e.g., legal planning, advocacy, coping and self-care)
Here's some feedback from attendees at our 2023 conference:
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"Lots of great presentations"
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"What a total eye opener"
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"Getting to meet other parents of TSC kids."
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"Helpful, relevant."
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"New info on progress for TSC sufferers."
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"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
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Watch this space and keep an eye out for updates in Newsletters as we finalise the details for the conference.
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!
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Look out for a survey from us to express interest in attending & let us know what you want from the conference.
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Follow and engage with our social media pages (see here for all the links).
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Subscribe to our YouTube channel and watch, share, like or comment on videos from our previous conferences, so we can demonstrate their value.
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Join us in Auckland on 18th July for our FundRaver at Northern Line Bar & Social - DJs, food & cocktails (free entry).
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Fundraise or make a donation for the conference using our dedicated Givealittle page
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Download our conference fundraiser flyers here: Image | A4 version | A5 version
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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.
TSCNZ Annual general meeting 2025
The Annual General Meeting of the Society was held on Monday 4th August 2025.
2025/2026 Office Holders:
President - Helen Willacy, Secretary - Tom Maling, Treasurer - TBC
We teamed up with Rare Disorders NZ for some joint picnics/get togethers.
It was lovely to meet families affected by TSC and other rare disorders.
In Auckland, TSCNZ Committee member and Secretary Tom was joined by Rare Disorders NZ Board Chair James.
Helen and Leah were joined by families from the Waikato in Tirau.
Earlier, Community Organiser Lisa attended the Rare Disorders NZ 25th Anniversary Awards Ceremony and was a judge at the Rare Beer Challenge.
March 2025
TSCNZ & Rare Disorders NZ Glow Up Show Up events
Call us for Questions
+6421 154 7017
Volunteer Your Time
We'd love to hear from you and suggest effective ways you can assist our organisation!