TuberousSclerosis NZ

A registered charity providing information and support for people with Tuberous Sclerosis Complex and their families. Donate at

[TuberousSclerosis NZ @TSC_NZ]

https://t.co/VpAoPfBMKr #tscglobalday #tuberoussclerosiscomplex

[TuberousSclerosis NZ @TSC_NZ]

Our latest newsletter is out for #TSCGlobalDay this Friday. You can find it at https://t.co/SdsBGSImel Lots of helpful resources - and ways for you to get involved.
#TSCGlobalVirtualRelay #FindaCure4TSC

[TuberousSclerosis NZ @TSC_NZ]

Leah and Helen from #tscnz kicked off the TSC Global Virtual Relay.
We'd love our NZ TSC community to join in the fun too.
Download and print the flyer, take a photo of the TSC hero in your family holding it and upload it back up to
https://t.co/mBsg6wOrYw...
#TSCGlobalDay

[TuberousSclerosis NZ @TSC_NZ]

More great work for the #tuberoussclerosiscomplex community from @TANDconsortium More at https://t.co/U8pC0ywPTc

[TuberousSclerosis NZ @TSC_NZ]

Thank you to all of you who have helped TSCNZ through @givealittle this year!
Givealittle Day is a reminder that the fundraising never stops, especially for #RareDisorders. If you would like to help, we're at https://t.co/0SOfZg0eDs

[TuberousSclerosis NZ @TSC_NZ]

Is #tuberoussclerosiscomplex a part of your life in Aotearoa New Zealand? Help Rare Disorders NZ help you
https://t.co/p28v3gk1pY

[TuberousSclerosis NZ @TSC_NZ]

Congratulations Rylee Sayer on your #swimmingnz debut at the 2025 World Champs - including 2 finals! Read more about Rylee's #courage and #determination at https://t.co/xYuS2uNV0v... #tuberoussclerosiscomplex #paraswimming

[TuberousSclerosis NZ @TSC_NZ]

Please support Tom as he helps us https://t.co/7zC209oKQY #givealittlenz #tuberoussclerosiscomplex

[TuberousSclerosis NZ @TSC_NZ]

Up to 80% of people with TSC will have tumours in their kidneys called AML's (angiomyolipomas). While in many cases these cause no major issues, regular ultrasounds are recommended More at https://t.co/le4YQjrb4P #TuberousSclerosisComplex #WorldKidneyDay #raredisorders_nz

[TuberousSclerosis NZ @TSC_NZ]

@raredisorders_nz petition needs your signature! We finally have a national Rare Disorders Strategy, now we need action to implement it. Please stand with the rare disorder community and sign the petition today at
https://t.co/02858tvHDU
#raredisordersmonth

[TuberousSclerosis NZ @TSC_NZ]

#raredisordersmonth #glowupshowup PICNICS in Auckland March 8, Wellington March 8, Tirau March 18. More information in our Newsletter at https://t.co/b4te9Enwl8 #tuberoussclerosiscomplex

[TuberousSclerosis NZ @TSC_NZ]

4 year old Bear has cut his hair - raising money for @TSC_NZ in memory of his brother Rua who lived with #tuberoussclerosiscomplex. You can help too! Simply go to https://t.co/o30nbzHfb0 and donate before this Thursday. You're a #TSC_Hero Bear!

[TuberousSclerosis NZ @TSC_NZ]

As minority Health communities fight for funding, they need solid data. Which is what #UniversityofAuckland Compass Research Centre delivers. #TSC_NZ committee member Lisa Underwood spoke at today's Community event about her own #healthcare research #raredisorders

[TuberousSclerosis NZ @TSC_NZ]

The #tuberoussclerosiscomplex community are welcome to attend the **TSCNZ AGM ** in Auckland on **Saturday 10th August** Visit https://t.co/Yz402cPV8B for more details. See you there!

[TuberousSclerosis NZ @TSC_NZ]

Lymphangioleiomyomatosis (LAM) is a rare, fatal lung disease that almost exclusively affects women. Although research is ongoing, there is currently no cure.
LAM affects about 30% of women with TSC. #WWLAM #rare_disordersnz #tuberoussclerosiscomplex #thelamfoundation

[TuberousSclerosis NZ @TSC_NZ]

email us at [email protected] if you'd like to attend. Or head to https://t.co/b4te9Enwl8 for more information

[TuberousSclerosis NZ @TSC_NZ]

#worldkidneyday2024 14 March To learn more about New Zealand specific challenges and kidney care - Search for Tuberous Sclerosis Complex NZ on YouTube

[TuberousSclerosis NZ @TSC_NZ]

#GivingTuesday 2023 is this Tuesday, November 28
This year You can help our team of volunteers and all those who live with #tuberoussclerosis by making a donation to our NZ registered charity!
Thank you for support - Find out more and Donate at https://t.co/le4YQjrb4P

[TuberousSclerosis NZ @TSC_NZ]

https://t.co/NO4LOf1aUB
A great read for NZ GPs too! Thank you #AuTSC #tuberoussclerosiscomplex

[TuberousSclerosis NZ @TSC_NZ]

A great initiative by one of the 8 #parenttoparentnz Support Groups in Auckland. Grab a free coffee and chat with other parents and carers who know what it's like to care for a child with health impairments.
More details of their 15 offices nationwide at https://t.co/gaSj2YoGpA