Tuberous Sclerosis Complex New Zealand

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

19 Followers 5 Following 10 Posts Joined Dec 2024
Posts Following
5 months ago
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Is #tuberoussclerosiscomplex a part of your life in Aotearoa New Zealand? Help Rare Disorders NZ help you
Raredisorders.org.NZ

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5 months ago
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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

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9 months ago
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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

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10 months ago
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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

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10 months ago
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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

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10 months ago
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See what we’re up to in our latest newsletter mailchi.mp/c6633fe27fa1...
#tuberoussclerosiscomplex #tscglobalawarenessday

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11 months ago
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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

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11 months ago
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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...

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1 year ago
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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

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1 year ago
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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

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