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
- Adenoid Cystic Carcinoma (ACC) Support NZ
- ALD Foundation Trust
- APERT Syndrome support group
- Arnold Chiari Malformation Support Group
- Cauda Equina Support Group New Zealand
- CDH Bubbies New Zealand
- Charge Syndrome Australasia
- Congenital Cytomegalovirus Support Group
- Cushing Syndrome support group
- Ectodermal Dysplasia
- FOXG1 New Zealand Support Group
- Gastroparesis support group New Zealand
- Idiopathic Intracranial Hypertension New Zealand
- IBM Inclusion Body Myositis
- Ladybug Foundation
- Lichen Sclerosis New Zealand and Australia Support Group
- Living with Dercums Disease
- Marfan NZ & Related Connective Tissue Disorders
- NZ EOE Support
- NZ Early Menopause Support Group
- Orthostatic Tremor Support Group
- Osteogenesis Imperfecta Support Group
- Perry Syndrome Support Group
- Primary biliary cholangitis support group
- Restless Legs Syndrome Support Group
- Sarcoidosis New Zealand
- Sex chromosome aneuploidy (SCA)
- Spina Bifida Association of NZ
- Thoracic Outlet Syndrome NZ
- Trisomy 9
- Usher Syndrome Aotearoa NZ
