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
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.
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.
in October 2021 FAP Gene are not going to update the website and will just have their Facebook Page which now as over 1200 members
In the past 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.
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'.