This is a directory of the support group collective that works with Rare Disorders New Zealand. It is by no means an exhaustive list of support groups for the 7,000 plus rare disorders.

If your support group would like to join our collective, please contact us

If you have searched the directory and cannot find a support group for your disorder, please contact us as we can still provide support.

  • You can receive our newsletter
  • We may have contacts or knowledge of support groups for your disorder that we can share with you.
  • We can organise a contact point for families who are affected by genetic conditions so rare that they do not have their own support group.

You can search the collective directory for support groups below using disorder names or conditions.

AL Amyloidosis NZ Support Group
EDNZ - Ectodermal Dysplasias New Zealand
Blinatumomab for Acute Lymphoblastic Leukaemia NZ
PURA Foundation
PNH Support Association of New Zealand

Paroxysmal Nocturnal Haemoglobinuria

Henoch-Schönlein purpura (HSP)

Henoch-Schönlein purpura

Muskaan Care Trust NZ

Muskaan Care Trust NZ for Thalassaemia and Sickle Cell Anaemia