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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 140 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


Cure Mucolipidosis
Anthrogryposis group
chekee hero  head neck nz 
wm nz

    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 & Related Connective Tissue Disorders
    Kawasaki Disease NZ
  • Adenoid Cytic Carinoma (ACC) Support NZ
  • NZ Autoinflammatory & Periodic Fever Syndromes
  • EGPA/Churg Strauss New Zealand
  • MdDS/ NZ Aotearoa