Acromegaly Society(external link)(external link)
Information booklets, videos, links, glossary, healthcare records, peer support, education and regular social gatherings.
Ehlers-Danlos Advocacy Organisation(external link)(external link)
Information and support for families with Ehlers-Danlos syndrome is available by emailing the following contact address: info@EDAO.org.nz
Guillain-Barre Syndrome Support Group NZ Trust(external link)(external link)
Phone (04) 476 4323 for the Wellington office, (03) 526 6076 for Nelson and (07) 549 0931 for Katikati. Aims to provide a contact point for newly diagnosed patients and to get information to a patient and their family as soon as possible after diagnosis. Offers personal stories, support group activities, newsletters, links, conferences, Facebook group, medical advisory board and more.
HAE (Hope, Advocacy and Education) Australasia(external link)(external link)
Support for New Zealanders and Australians affected by hereditary angioedema. Focuses on increasing HAE awareness and education, diagnosis, improving patient access to therapy and fostering research.
Multiple Sclerosis and Parkinson’s Canterbury(external link)(external link)
Phone (03) 366 2857 Helps members maintain health and wellness throughout their journey with Multiple Sclerosis, Parkinson's, and other rare neurological disorders.
Rare Disorders NZ(external link)(external link)
Phone (04) 385 1119. New Zealand's central starting point for information about rare diseases.
PWS (Prader-Willi syndrome) New Zealand(external link)(external link)
Freephone 0800 4 PWS HELP. Supporting people with Prader-Willi syndrome and their families.