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Rare Disorders NZ is the collective voice of all people living with a rare disorder and their whanau. Our rare collective is made up of more than 100 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

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  • 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