Tuberous Sclerosis Complex New Zealand
@tscnz.bsky.social
TSCNZ is run by a management committee of volunteers. Our objective is to ensure that our TSC community are informed, connected and supported.
Find out more at TSC.org.nz
Find out more at TSC.org.nz
Is #tuberoussclerosiscomplex a part of your life in Aotearoa New Zealand? Help Rare Disorders NZ help you
Raredisorders.org.NZ
Raredisorders.org.NZ
October 7, 2025 at 2:52 AM
Is #tuberoussclerosiscomplex a part of your life in Aotearoa New Zealand? Help Rare Disorders NZ help you
Raredisorders.org.NZ
Raredisorders.org.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 www.waikatotimes.co.nz/nz-news/3607... #tuberoussclerosiscomplex #paraswimming
October 6, 2025 at 1:37 AM
Congratulations Rylee Sayer on your #swimmingnz debut at the 2025 World Champs - including 2 finals! Read more about Rylee's #courage and #determination at www.waikatotimes.co.nz/nz-news/3607... #tuberoussclerosiscomplex #paraswimming
The link to the excellent #mTor inhibitor presentation by Doctors Chan and Chung from Sydney Children’s Hospital tsa.org.au/videos/dr-de... #tuberoussclerosiscomplex
Dr Denise Chan and Dr Clara Chung discuss mTOR inhibitor treatments in TSC - Tuberous Sclerosis Australia
In this presentation Dr Denise Chan (Paediatric Neurologist) and Dr Clara Chung (Clinical Geneticist) from Sydney Children's Hospital discuss the use of mTOR
tsa.org.au
June 10, 2025 at 3:01 AM
The link to the excellent #mTor inhibitor presentation by Doctors Chan and Chung from Sydney Children’s Hospital tsa.org.au/videos/dr-de... #tuberoussclerosiscomplex
Help #Love find a way:TSC Global Awareness Day May 15 See how you can help at TSC.org.nz #tuberoussclerosiscomplex #raredisease
May 10, 2025 at 5:01 AM
Help #Love find a way:TSC Global Awareness Day May 15 See how you can help at TSC.org.nz #tuberoussclerosiscomplex #raredisease
Many people living with TSC are now prescribed #everolimus or #sirolimus, life changing medications. These drugs are derived from Rapamycin, an immunosuppressant isolated in the 70s from bacterium found on Easter Island/Rapanui tsa.org.au/tsa-news/ava... Thank you #tuberoussclerosisAustralia
May 8, 2025 at 4:32 AM
Many people living with TSC are now prescribed #everolimus or #sirolimus, life changing medications. These drugs are derived from Rapamycin, an immunosuppressant isolated in the 70s from bacterium found on Easter Island/Rapanui tsa.org.au/tsa-news/ava... Thank you #tuberoussclerosisAustralia
See what we’re up to in our latest newsletter mailchi.mp/c6633fe27fa1...
#tuberoussclerosiscomplex #tscglobalawarenessday
#tuberoussclerosiscomplex #tscglobalawarenessday
April 27, 2025 at 10:30 PM
See what we’re up to in our latest newsletter mailchi.mp/c6633fe27fa1...
#tuberoussclerosiscomplex #tscglobalawarenessday
#tuberoussclerosiscomplex #tscglobalawarenessday
TSC NZ committee member Tom Maling has been climbing for the cause! Find out more at givealittle.co.nz/fundraiser/s... #tuberoussclerosiscomplex
April 15, 2025 at 1:05 AM
TSC NZ committee member Tom Maling has been climbing for the cause! Find out more at givealittle.co.nz/fundraiser/s... #tuberoussclerosiscomplex
This cause is close to our heart - please sign: our.actionstation.org.nz/petitions/fa...
Fairness for the Hospitalised: Stop Benefit Cuts After 13 Weeks
We envision a compassionate and equitable society where individuals who are hospitalised can recover without financial hardship or fear of losing their benefits. In this future, we prioritise the dign...
our.actionstation.org.nz
April 15, 2025 at 12:22 AM
This cause is close to our heart - please sign: our.actionstation.org.nz/petitions/fa...
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 information at TSC.org.nz #TuberousSclerosisComplex #WorldKidneyDay #raredisorders_nz
While in many cases these cause no major issues, regular ultrasounds are recommended. More information at TSC.org.nz #TuberousSclerosisComplex #WorldKidneyDay #raredisorders_nz
March 12, 2025 at 3:56 AM
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 information at TSC.org.nz #TuberousSclerosisComplex #WorldKidneyDay #raredisorders_nz
While in many cases these cause no major issues, regular ultrasounds are recommended. More information at TSC.org.nz #TuberousSclerosisComplex #WorldKidneyDay #raredisorders_nz
The Rare Disorders 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
rdnz.nationbuilder.com/petition #raredisordersmonth #tuberoussclerosiscomplex
rdnz.nationbuilder.com/petition #raredisordersmonth #tuberoussclerosiscomplex
February 26, 2025 at 6:41 PM
The Rare Disorders 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
rdnz.nationbuilder.com/petition #raredisordersmonth #tuberoussclerosiscomplex
rdnz.nationbuilder.com/petition #raredisordersmonth #tuberoussclerosiscomplex