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After being diagnosed with PAN in August 2004 Dirk Biddle, a research scientist from Australia, decided to research some information on the disease. He found some information but clearly found also there was a need for more research. On the internet he came across the PAN Support Network (www.pansupport.org) and Ed Becker from the USA, the initiator and moderator of that group. From that contact the idea of creating a survey to undertake new and vital research was born. Ed knew Birgit Wiedenmann-Naujoks, Germany, webmaster of www.vaskulitis.org, was interested in such an idea and so an international triumvirate was born.
Originally calling the group PANDA (Polyarteritis Nodosa Development Association), and after overcoming the problems of different time-zones, the three started elaborating a survey on Polyarteritis Nodosa and Related Vasculitis Conditions. Four months later, after many late nights hunched over the keyboard, countless hundreds of emails, and although none of them have ever met in real life, the survey is now a reality.
The group changed its name to RPNVC (despite the environmental truth, on the internet there are just too many PANDAs) and have now launched the survey online. This survey provides an avenue for sufferers of PAN and related vasculitis conditions to support much needed research into these often rare diseases by relating their personal story in both a quantitative and qualitative way. It is the hope of the RPNVC group that visitors to their website, both sufferers and non-sufferers alike, will take a little time out from their busy schedules to complete the survey and support a much needed research effort.
So please, visit www.rpnvc.org and play your part in new, vital research aimed to improve the recognition, prevention, and treatment of PAN and Related Vasculitis Conditions for sufferers all over the world.