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:
Parent to Parent
An organisation that can help connect you with other parents who have a child with the same or similar condition.
Genetic Health Services
Genetic Health Services diagnose and provide support for genetic disorders.
Genetic and Rare Diseases Information Center
A US website that provides a lot of useful information on rare and genetic diseases.
Orphanet – portal for rare diseases and drugs
A European website with information on rare diseases and orphan drugs.