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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
ausEE
 
chekee hero  head neck nz 

 

     
         

 

  • RARE DISORDER SUPPORT GROUPS WITHOUT LOGOS

  • aHus New Zealand
  • Acoustic Neuroma Association of New Zealand Inc
  • Adenoid Cytic Carinoma (ACC) Support NZ
  • ALD Foundation Trust
    Alpha-1 Association New Zealand
  • Alström Syndrome International
  • Alternating Hemiplegia of Childhood Foundation (ahcf)
  • ANE International - Acute necrotising encephalopathy
  • Aortic Dissection Support Group
  • APERT Syndrome support group
    Arnold Chiari Malformation Support Group
  • Australian Cystinosis Support Group
  • Blinatumomab for Acute Lymphoblastic Leukaemia NZ
  • Cauda Equina Support Group New Zealand
  • CDH Australia - Congenital diaphragmatic hernia
  • CDH Bubbies New Zealand
  • Cerebral Palsy Society
  • Charge Syndrome Australasia
  • Chordoma Aotearoa New Zealand
  • Cleft New Zealand | Te Manatōpū Ngutu Riwha o Aotearoa 
    Congenital Cytomegalovirus Support Group
    Cornelia de Lange Syndrome Support Group
  • Cushings Syndrome support group
    Cri du Chat Support Group of New Zealand
  • Cyclic Vomiting Syndrome New Zealand
    Cystinosis Support Group
  • DOORS Syndrome Support Group
  • Ectodermal Dysplasia Support Group
    FOXG1 New Zealand Suport Group
  • Gaucher Association of Australia & New Zealand Inc.
  • Gastroparesis support group New Zealand
    Hereditary haemorrhagic telangiectasia Support Group
    Hirschsprung's Support Group
  • Hirschsprung's NZ/AUS
  • Hypersomnolence Australia
  • IIH NZ
    Intracranial Hypertension New Zealand
  • International Waldenströms Macroglobulinemia Federation NZ (IWMF)
    Immune Thrombocytopenia Purpura (ITP) NZ
  • irf2bpl support groups
  • Kawasaki Disease NZ
  • Ladybug Foundation
  • Lichen Sclerosis New Zealand and Austrialia Support Group
  • Living with Dercums Disease
  • Lymphoedema Support Network
  • Lynch Syndrome New Zealand
  • Marfan NZ & Related Connective Tissue Disorders
  • MdDS/ NZ Aotearoa
    Myasthenia Gravis Support Group
  • Myositis NZ
    Mal De embarquement Syndrome Support
  • Myoadenylate deaminase deficiency
  • Neuroendocrine Cancer New Zealand
  • Neurofibromatosis Association of New Zealand
  • New Zealand Down Syndrome Association
  • New Zealand EoE support group
    New Zealand Williams Syndrome Association
  • NZ Amyloidosis Patients Association (NZAPA)
  • NZ Autoinflammatory & Periodic Fever Syndromes
  • NZ Early Menopause Support Group
  • NZ Stills support group (AOSD/JIA)
    Occulo Dento Digital Dysplasia Support Group
    Orthostatic Tremor Support Group
    Osteogenesis Imperfect Support Group
  • Pemphigus New Zealand
    Perthes Support Group
    Perry Syndrome Support Group
  • Poland syndrome
    Porphyria Support Group (NZ)
  • Primary biliary cholangitis support group
  • PURA Foundation
  • PXE International - pseudoxanthoma elasticum
  • Rare Fat Disorders Support Group
    Restless Legs Syndrome Support Group
  • Retina NZ Inc. - Retinal disorders
  • Rett New Zealand
  • Sarcoidosis New Zealand
  • Sex chromosome aneuploidy (SCA)
  • Scleroderma New Zealand Inc
  • SCN2A Australia and Asia Pacific
  • Sjögren's Syndrome New Zealand
  • Spina Bifida Association of NZ
  • SWAN - NZ Support for those affected by syndromes without a name
  • Tarlov Cyst New Zealand
  • Te Whānau Kōtuku -Rare Disorders NZ's Māori support group
  • The Duncan Foundation - Neuromuscular conditions
  • Trisomy 9
  • Trisomy13NZ
  • Turner Syndrome Support Group NZ Inc.
  • Usher Kids - Usher syndrome
  • Vascular Compression and vEDS (and associated) NZ Hub
  • VHL New Zealand - Von Hippel Lindau Disease
  • XXYers