The Rare Disorder Collective
The support groups that provide the voice of rare
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 150 disorder-specific support groups.
Our work is informed by the issues important to our collective. 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 Collective
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
- Alström Syndrome International
- 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 (rare forms)
- 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
- 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)
- Kawasaki Disease NZ
- Ladybug Foundation
- Lichen Sclerosis New Zealand and Austrialia Support Group
- Living with Dercums Disease
- Lymphoedema Support Network
- Marfan NZ & Related Connective Tissue Disorders
- MdDS/ NZ Aotearoa
- Myasthenia Gravis Support Group
- Myositis NZ
- Mal De embarquement Syndrome Support
- 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
- Porphyria Support Group (NZ)
- Primary biliary cholangitis support group
- PURA Foundation
- 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
- 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
