FAP gene support group
The FAP Gene Website was started in 2004 by Mick Mason in Melton Mowbray Leicestershire when he realised there was a need for information on FAP. This information was to be from sources which were reliable, non-medical, up to date and easily understood by patients.
In 2005 Mick was introduced to John Roberts who lived not far away in Derby by Kay Neale at The Polyposis Registry in St Mark’s Hospital Harrow North London. Kay already knew John from an earlier Polyposis Newsletter and invited Mick to The Registry to discuss his plans for an eventual Patient Information Day. She was also interested in the amount of information already contained on the website and how useful it was to anyone with an interest in FAP.
The combination proved an instant success with Micks knowledge of Website Design and John’s determination to hold an early Information/Family Day in March 2006. They were joined by John Nickels of Bretby who now organises The Chat Days and is the groups fundraiser.
Now in June 2016 FAP Gene are looking at ways to attract more people to their annual event. Any ideas are always welcome.
Several talks have been given at Nottingham University, Coventry University and the Royal Marsden Hospital in London. In June 2008 they were invited to write an article for a medical publication by The Rosa Gallo Foundation in Verona on ‘Support for FAP Patients’. The only article in 24 chapters from a non-medical source. This was followed by Mick giving their presentation at The Rosa Gallo Foundations Annual Conference in December 2008.
The website has been Recommended by Macmillan Cancer Support as a useful source of information in their booklet ‘Cancer Genetics’ and also on The National Genetics Education and Developement Centre’s website ‘Telling Stories’.