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.

Cerebral Palsy Society
Cornelia de Lange Syndrome Support Group
Cri du Chat Support Group of New Zealand
Cystic Fibrosis New Zealand (CFNZ)
DEBRA New Zealand

Dystrophic Epidermolysis Bullosa; EBS; EB Simplex; EBS Localised; EBS Dowling Meara; EBS Muscular dystrophy; EBS Autosomal recessive; EBS Superficialis; EBS lethal acantholytic; EBS plakophilin-1 deficiency; EBS pyloric atresia; EBS Ogna; EBS mottled pigmentation; EBS migratory circinate; Junctional EB; JEB Herlitz; JEB nonHerlitz; JEB pyloric atresia; JE inversa; JEB late onset; Dominant Dystrophic EB; DDEB generalized; DDEB acral; DDEB pretibial; DDEB nails only; DDEB bullous dermolysis of the newborn; Recessive Dystrophic EB; RDEB severe generalized; RDEB pruriginosa; RDEB pretibial; RDEB inversa; RDEB centripetalis; Kindler Syndrome

The NZ Dystonia Patient Network
Ehlers–Danlos Sundromes New Zealand - Loosley Speaking (EDS)
Foetal Anti-Convulsant Syndrome NZ