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Nephronophthisis, a rare juvenile kidney disease.

News stories

Our son Ken, was diagnosed in June 2000 with a kidney disease called Nepronophthisis . During the first visit we learned that Nephronophthisis is inherited and is very rare. There are many, many pages on kidney failure and end stage renal problems in general but not many on this particular condition. For this reason this web page has been created. We wish to share what information we have been able to get, from medical journals, newspaper articles, medical professionals and from our own experiences. Our hope is that you will be able to benefit from it.

Total Trips to Calgary to date is 45
For 2000: 11 trips
For 2001: 13 trips
For 2002: 3 trips
For 2003: 4 trips
For 2004: 5 trips
For 2005: 3 trips
For 2006: 2 trips
For 2008/09: 4 trips
For 2010: One round trip to Ottawa, Ont.
For 2011: 0 trips

Total distance driven: 58,098km or 34,858mi
Round trip driving: about 960 hours

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An eight way kidney donation and transplant took place between Calgary, Ottawa and Vancouver on April 28, 2010.
This site was created on Aug 15, 2000
This site was last updated July 12, 2012