AL Amyloidosis Support Group NZ is a supportive and educational resource for AL amyloidosis patients here in Aotearoa. They formed as an offshoot of the New Zealand Amyloidosis Patients Association (NZAPA) in 2022 because that organization primarily advocates for ATTR amyloidosis. It is misleading that both ATTR and AL use amyloidosis in the name of the disease. AL (can also be referred to as systemic) amyloidosis is a very different disease process compared to ATTR. AL amyloidosis shares more in common with myeloma because it is rooted in a plasma cell:
- There is an approximate 15% overlap in patients who have both diseases.
- Myeloma and AL amyloidosis have the same treatment protocols. We need funding for the same modern medicines that myeloma patients need.
- Because of this myeloma organizations globally provide information about AL amyloidosis on their websites.
The AL Amyloidosis Support Group NZ meet online every 6-8 weeks and sometimes have guest speakers.
If you could like to find out more you can:
- contact Tove Jensen-Munroe at ToveJensenNZ@gmail.com
- Head to their Facebook page or wesbite
Further information about AL amyloidosis: