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 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. 

 

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
  Spina Bifida Association of NZ
  Aortic Dissection Support Group
  Marfan NZ & Rlated Connective Tissue Disorders
  Kawasaki Disease NZ
• Adenoid Cytic Carinoma (ACC) Support NZ
• NZ Autoinflammatory & Periodic Fever Syndromes