A rare disorder is one that only affects a small proportion of the population.
There are many different kinds of rare disorder, and combined together they are relatively common. They are often genetic – they run in the family and people have them from conception.
Many of these disorders have no effective treatment but health professionals need to know where to find up-to-date information and ways in which the people with these conditions can be supported. Families often find that being linked into other families, researchers and clinicians though international networks provides much needed support and hope.
The New Zealand Organisation for Rare Disorders is an organisation that provides support and information for New Zealanders diagnosed with a rare disorder. Their website includes information on: