New Zealand Organisation for Rare Disorders
The NZORD website provides an extremely comprehensive list of support groups for specialised organisations devoted to the various rare (and not-so-rare) diseases and disorders. This is a good first port of call for anyone not knowing where to start when trying to find information about a specific disorder. In addition, NZORD also acts as host to NZORDgroups, which provides a home on the Internet for a number of the smaller disorder-specific groups including: the Post-Polio Support Society NZ (Inc), Fragile X Trust New Zealand, Guillian Barré Syndrome Group, Lysosomal Diseases New Zealand, Narcolepsy Support Group of New Zealand, New Zealand VCFS (Velo Cardio Facial Syndrome) Support Group, and Rett New Zealand - to name just a few!
My own browse of the NZORD resources led me to the website for the Post-Polio Support Society, which provides an excellent history of polio and post-polio syndrome in New Zealand. Data on this website demonstrates that the last polio epidemic in NZ ended in 1962 with the introduction of an effective polio vaccine. Before that time over 9000 cases of polio had been recorded in NZ. Post-polio syndrome is known to have a dormancy period of around 20 to 45 years, so new cases of post-polio syndrome in NZ should now likely to be exceedingly rare. Long may it last!
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