Rare disorder collective
Rare Disorders NZ is the collective voice of all people living with a rare disorder and their whānau.
Our rare collective is made up of more than 130 disorder-specific support groups.
Our work is informed by the issues important to our collective, and we work together to improve healthcare and wellbeing for everyone living with a rare health condition in New Zealand.
If your support group would like to join our collective, please contact us.



























































RARE DISORDER SUPPORT GROUPS WITHOUT LOGOS:
- ALD Foundation Trust
Alpha-1 Association New Zealand
Arnold Chiari Malformation Support Group
Congenital Cytomegalovirus Support Group
Cornelia de Lange Syndrome Support Group
Cri du Chat Support Group of New Zealand
Cystinosis Support Group
Foetal Anti-Convulsant Syndrome New Zealand
FOXG1 New Zealand Suport Group
Hereditary haemorrhagic telangiectasia Support Group
Hirschsprung's Support Group
Intracranial Hypertension New Zealand
Immune Thrombocytopenia Purpura (ITP) NZ
Myasthenia Gravis Support Group
Mal De embarquement Syndrome Support
New Zealand Williams Syndrome Association
Occulo Dento Digital Dysplasia Support Group
Orthostatic Tremor Support Group
Osteogenesis Imperfect Support Group
Perthes Support Group
Perry Syndrome Support Group
Porphyria Support Group (NZ)
Restless Legs Syndrome Support Group
Sarcoidosis New Zealand
Tarlov Cyst New Zealand - Pemphigus New Zealand
Ladybug Foundation
SCN2A Australia and Asia Pacific - Myositis NZ
aHus New Zealand
New Zealand EoE support group
Spina Bifida Association of NZ
Aortic Dissection Support Group
Marfan NZ & Rlated Connective Tissue Disorders