06 Jun 2008

New Zealand Organisation for Rare Disorders

NZORD Rare Disorders IconGot a disease that only you can pronounce? Or perhaps you recently had a patient come to your clinic with a disorder that you secretly had to look up in a textbook to find out what it was? Maybe you are just looking for information and support to provide people with one of the hundreds of less common pathologies? Then this website is for you. NZORD is a charitable trust that was established in 2000. It aims to help people affected by rare disorders and their families by providing them with information, support and advocacy. NZORD acts as a watchdog for issues related to rare disease, has made multiple submissions on public policies, and has successful lobbied for a specialist metabolic service for New Zealand. The NZORD website has something for everyone: patients and families, clinicians and researchers, policy-makers and health funders. In other words, this website is an excellent resource, and should definitely be promoted.

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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Rehabilitation conference logoThe 2009 Rehabilitation Conference will be held in Queenstown on 21–25 July. More about the conference.