Support services and information for people affected by rare disorders and their family/whānau.
Information booklets, videos, links, glossary, healthcare records, peer support, education and regular social gatherings.
Ehlers-Danlos Advocacy Organisation
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
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
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.
Rare Disorders NZ
Phone (04) 385 1119. New Zealand's central starting point for information about rare diseases.
PWS (Prader-Willi syndrome) New Zealand
Freephone 0800 4 PWS HELP. Supporting people with Prader-Willi syndrome and their families.