This is a directory of the support group collective that works with Rare Disorders New Zealand. It is by no means an exhaustive list of support groups for the 7,000 plus rare disorders.

If your support group would like to join our collective, please contact us

If you have searched the directory and cannot find a support group for your disorder, please contact us as we can still provide support.

  • You can receive our newsletter
  • We may have contacts or knowledge of support groups for your disorder that we can share with you.
  • We can organise a contact point for families who are affected by genetic conditions so rare that they do not have their own support group.

You can search the collective directory for support groups below using disorder names or conditions.

Li Fraumeni Syndrome Association
Lichen Sclerosis New Zealand and Austrialia Support Group
Little People of New Zealand (LPNZ)

Achondrogenesis; Achondroplasia; Acrodysostosis; Acromesomelic Dysplasia; Acromesomelic Dysplasia Maroteaux Type; AMDM;
Atelosteogenesis; Campomelic Dysplasia;
Cartilage Hair Hypoplasia; CHH; Metaphyseal; Chondrodysplasia; McKusick type; Chondrodysplasia Punctata;
Cleidocranial Dysostosis; Conradi-Hunermann; Syndrome; Cornelia de Lange; Cranioectodermal dysplasia; Desbuquois syndrome; Diastrophic Dysplasia; Dyggve-Melchior-Clausen; Dyssegmental Dysplasia; Ellis van Creveld Syndrome; Chondroectodermal Dysplasia EVC; Growth Hormone Deficiency; Hallerman-Streiff Syndrome; Hunter Syndrome; MPS II; Hurler-Scheie Syndrome; MPS I; Hypochondrogenesis; Hypochondroplasia; Hypophosphatasia; Hypophosphatemia; Hypopituitary; Hypothyroidism; Jarcho-Levin Syndrome Spondylothoracic Dysplasia Spondylocostal; Jeune Syndrome Asphyxiating Thoracic Dysplasia; Asphyxiating Thoracic Dystrophy; Kniest Dysplasia; Laron Dwarfism; Larsen Syndrome; Leri-Weill Dyschondrosteosis Mesomelic Dwarfism, Madelung Deformity; Lethal Skeletal Dysplasias; Maroteaux-Lamy MPS VI MPS VI; Mesomelic Dysplasia; Metaphyseal Chondrodysplasia-Jansen Type; Metaphyseal Dysplasia-Schmid Type; Metatropic Dysplasia; Morquio Syndrome MPS IV; Mucopolysaccharidoses; Multiple Epiphyseal Dysplasia MED; Osteogenesis Imperfecta OI; Pituitary Dwarfism; Precocious Puberty; Primordial; Dwarfism; Microcephalic Osteodysplastic; Primordial Dwarfism MOPD; Pseudoachondroplasia
Rhizomelic Chondrodysplasia Punctata; Rickets
Robinow dwarfism syndrome; Russell-Silver Syndrome; SADDAN: Severe Achondroplasia with Acanthosis Nigricans and Developmental Delay; Schmike Immuneosseous Dysplasia; Seckel Syndrome; Short Rib Polydactyly; Shwachman-Diamond Syndrome; Spondyloepimetaphyseal Dysplasia-Strudwick SEMD; Spondyloepimetaphyseal dysplasias; Spondyloepiphyseal Dysplasia; Spondyloepiphyseal Dysplasia Congenita SED-Congenita SEDC;
Spondyloepiphyseal Dysplasia Tarda SED-Tarda SEDT SED-L;
Spondylometaphyseal Dysplasia-Corner Fracture Type SMD SMD-Corner Fracture Type SMD-Sutcliffe Type; Spondylometaphyseal Dysplasia-Kozlowski SMD-Kozlowski SMDK; Thanatophoric Dysplasia
Trichorhinophalangeal Syndrome (Langer-Giedion syndrome)
Turner Syndrome
Type II Collagenopathies

MdDS/ NZ Aotearoa
Motor Neurone Disease Association (MNDA New Zealand)
Muscular Dystrophy New Zealand (MDANZ)

Becker Muscular Dystrophy; Congential Muscular Dystrophy (including Ullrich, Bethlem and Fukuyama, Muscle-Eye-Brain and Walker Warberg Syndrome); Distal Muscular Dystrophy; Duchenne Muscular Dystrophy; Emery-Dreifuss Muscular Dystrophy; Facioscapulohumeral Muscular Dystrophy; Limb-Girdle Muscular Dystrophy; Manifesting carrier of Becker or Duchenne Muscular Dystrophy; Myotonic Dystrophy Types 1 and 2; Occulopharyngeal Muscular Dystrophy; • Spinal Muscular Atrophy (SMA) - all types including: Type 1 Infantile Progressive SMA/Werdnig Hoffmann Disease; Type 2 Intermediate SMA; Type 3 Juvenile SMA/Kugelberg-Welander syndrome; Type 4 Adult SMA; Spinal Bulbar Muscular Atrophy (SBMA) / Kennedy's Disease and X-linked SBMA ; Spinal Muscular Atrophy with Respiratory Distress (SMARD1) / Distal SMA Type 1 (DSMA1) / Distal Hereditary Motor Neuropathy. Charcot-Marie-Tooth Disease (CMT)
(Hereditary Motor and Sensory Neuropathy); Dejerine-Sottas Disease (CMT Type 3); Hereditary Sensory Neuropathy; Dermatomyositis; Juvenile Dermatomyositis; Polymyositis; Inclusion Body Myositis; Myasthenia Gravis; Lambert-Eaton Syndrome; Congential Myasthenic Syndrome; CANVAS; Friedreich Ataxia (FA); Spinocerebellar Ataxia (SCA) - all types; Andersen-Tawil Syndrome; Central Core Disease; GNE Myopathy/Hereditary Inclusion Boby Myopathy/Distal Myopathy; Hyperthyroid Myopathy; Hypothyriod Myopathy; Myofibrillar Myopathy; Myotonia Congenita (Thomsen's and Becker's Disease); Myotubular Myopathy; Nemaline Myopathy; Paramyotonia Congenita; Periodic Paralysis Types 1 and 2; PROMM (Proximal Myotonic Myopathy)/ Myotonic Dystrophy Type 2; McArdle's Disease (Phosphorylase Deficiency); Pompe Disease (Acid Maltase Deficiency); Tarui's Disease (Phosphofructokinase Deficiency); Cori or Forbe's Disease (Debrancher Enzyme Deficiency); Mitochondrial Myopathy (including MELAS, MERRF, NARP and MIDD); Carnitine Deficiency; Caritine Palmityl Transferase Deficiency; Phosphoglycerate Kinase Deficiency; Phosphoglycerate Mutase Deficiency; Lactate Dehydrongenase Deficiency; Myoadenylate Deaminase Deficiency; Central Cavernous Hemangioma; Neurofibromatosis Type 1 and 2; Schwannomatosis; Tuberous Sclerosis; Von Hippel Lindau Syndrome; Adrenoleucodystrophy; Adrenomyeloneuropathy; Metachromatic Leucodystrophy

Myasthenia Gravis Support Group
NZ Early Menopause Support Group
Orthostatic Tremor Support Group
Perry Syndrome Support Group