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.

ANCA Vasculitis NZ support group
Scleroderma New Zealand Inc
Idiopathic Intracranial Hypertension New Zealand
Australian Cystinosis Support Group
Trisomy13 NZ
Hirschsprung’s NZ/AUS


DMD15+ Kiwi Families
Vascular Compression and vEDS (and associated) NZ Hub

Dysautonomia, Mast Cell, Mitral valve prolapse, Syringomyelia, Thoracic outlet syndrome, brachial outlet syndrome, Chondromalacia, Leaky gut syndrome, Intussusception, Dupuytren’s Contracture, Chiari Malformation, Dupuytren’s Contracture, Interstitial cystitis, Dercum’s disease

ITP Australia/New Zealand
Gastroparesis support group New Zealand