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 160 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

• 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
• 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)
  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