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
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
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
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
@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
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!
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
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!
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
#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
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