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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

18 Followers  |  5 Following  |  10 Posts  |  Joined: 12.12.2024  |  1.4554

Latest posts by tscnz.bsky.social on Bluesky

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Is #tuberoussclerosiscomplex a part of your life in Aotearoa New Zealand? Help Rare Disorders NZ help you
Raredisorders.org.NZ

07.10.2025 02:52 — 👍 0    🔁 0    💬 0    📌 0
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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

06.10.2025 01:36 — 👍 0    🔁 0    💬 0    📌 0
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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

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

10.06.2025 03:01 — 👍 0    🔁 0    💬 0    📌 0
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Help #Love find a way:TSC Global Awareness Day May 15 See how you can help at TSC.org.nz #tuberoussclerosiscomplex #raredisease

10.05.2025 05:01 — 👍 0    🔁 0    💬 0    📌 0
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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

08.05.2025 04:32 — 👍 1    🔁 1    💬 1    📌 0
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See what we’re up to in our latest newsletter mailchi.mp/c6633fe27fa1...
#tuberoussclerosiscomplex #tscglobalawarenessday

27.04.2025 22:30 — 👍 0    🔁 0    💬 0    📌 0
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TSC NZ committee member Tom Maling has been climbing for the cause! Find out more at givealittle.co.nz/fundraiser/s... #tuberoussclerosiscomplex

15.04.2025 01:05 — 👍 2    🔁 0    💬 0    📌 0
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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...

This cause is close to our heart - please sign: our.actionstation.org.nz/petitions/fa...

15.04.2025 00:22 — 👍 0    🔁 0    💬 0    📌 0
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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

12.03.2025 03:56 — 👍 1    🔁 0    💬 0    📌 0
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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

26.02.2025 18:40 — 👍 2    🔁 0    💬 0    📌 0

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