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