Rare Disorders Specialist List

As it can be difficult to find experts in rare disorders, the New Zealand Organisation for Rare Disorders and Cervin Media have worked closely together to prepare this helpful list for both doctors and patients.

We are keen to continue growing this list – if you are a specialist and would like to join please email health@cervinmedia.co.nz.

Alpha1 Antitrypsin Deficiency

Respiratory Medicine

Christchurch

Respiratory Medicine

Auckland

Respiratory Medicine

Wellington

Respiratory Medicine

Auckland

Alveolar Proteinosis

Respiratory Medicine

Auckland

Apert’s Syndrome

Plastic & Reconstructive Surgeon

Auckland

Atypical Haemolytic Uraemia Syndrome

Paediatrics

Auckland

Autoinflammatory Disorders

Allergy

Auckland

Allergy

Auckland

CANVAS (Cerebellar Ataxia Neuropathy Vestibullar Airoflaxia Syndrome)

Neurologist

Wellington

Craniosynostosis

Plastic & Reconstructive Surgeon

Auckland

Crouzon Syndrome

Plastic & Reconstructive Surgeon

Auckland

Ehlers Danlos Syndrome

Rheumatologist

Auckland

Encephaloceles

Plastic & Reconstructive Surgeon

Auckland

Eosinophilic Oesophagitis or Eosinophilic Gastrointestinal Disorders

Allergy

Auckland

Paediatric Gastroenterologist

Auckland

Allergy

Auckland

Eosinophilic Pneumonia

Respiratory Medicine

Auckland

Erthromelalgia Syndrome

Vascular Surgeon

Auckland

Fibrous Dysplasia

Plastic & Reconstructive Surgeon

Auckland

Graves Opthalmopathy / Exophthalmos

Plastic & Reconstructive Surgeon

Auckland

Guillane Barre

Neurologist

Dunedin

Neurologist

Hamilton

Hemifacial Microsomia

Plastic & Reconstructive Surgeon

Auckland

Hereditary Angioedema

Allergy

Auckland

Allergy

Auckland

Histiocytosis X

Respiratory Medicine

Auckland

Inflammatory Myopathies

Rheumatologist

Auckland

Inherited Retinal Dystrophies

Ophthalmology

Auckland

Interstitial Pneumonias

Respiratory Medicine

Auckland

LAM (Lymphangioleiomyomatosis)

Respiratory Medicine

Auckland

Respiratory Medicine

Auckland

Respiratory Medicine

Auckland

Laryngomalacia

Otolaryngologist

Hamilton

Otolaryngologist

Auckland

Otolaryngologist

Christchurch

Moebius Syndrome

Plastic & Reconstructive Surgeon

Auckland

Plastic & Reconstructive Surgeon

Wellington

Neurosarcoidosis

Neurologist

Hamilton

Pectus Carinatum

Plastic & Reconstructive Surgeon

Auckland

Perthes

Orthopaedic Surgeon

Tauranga

Orthopaedic Surgeon

Tauranga

Orthopaedic Surgeon

Tauranga

Orthopaedic Surgeon

New Plymouth

Popliteal Artery Entrapment Syndrome

Vascular Surgeon

Auckland

Primary Immunodeficiency Disorders

Allergy

Auckland

Allergy

Auckland

Primary Sclerosing Cholangitis

Gastroenterologist

Auckland

Gastroenterologist

Auckland

Sarcoidosis

Respiratory Medicine

Auckland

Respiratory Medicine

Auckland

Spasmodic Dysphonia (aka Laryngeal Dystonia)

Otolaryngologist

Auckland

Otolaryngologist

Auckland

Otolaryngologist

Auckland

Spina Bifida

Paediatric Surgeon

Hamilton

Orthopaedic Surgeon

Tauranga

Trigeminal neuralgia

Neurologist

Wellington

Neurosurgeon

Auckland

Neurologist

Hamilton

Neurosurgeon

Auckland

Neurosurgeon

Hamilton

Neurosurgeon

Auckland

TSC (Tuberous Sclerosis Complex)

Dermatologist

Auckland

Paediatric Neurologist

Auckland