| 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 Uk 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.
Now
in July 2009 FAP Gene have held their 4th Annual Information/Family
Day and showed a steady increase in numbers attending.
They have also added an Informal Chat Day after receiving
a few suggestions for more time to allow chat amongst
patients, families and friends.
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 Cancerbackup 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'.
|