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.

ALD Foundation Trust
Leukodystrophy Resource and Research Organisation  Inc.
Alpha-1 Association NN
The Angelman Network
Lysosomal Diseases New Zealand
Fabry Disease New Zealand
Fabry Australia
Gaucher Association of Australia & New Zealand Inc
New Zealand Pompe Network