FAP Gene Support Group are once again pleased to announce
that they have been invited to promote an online survey
for patients with FAP
In 2014 we were approached by Selina
Goodman a genetic counsellor for our views of what kind
of research would benefit patients with FAP.
At the time we suggested that the testing
of children was one of our most discussed items. This
followed a talk by Professor Alison Metcalfe on her
own Family Talk Project in 2009. Since then Selina has
had several conversations with Alison but in the end
decided to keep her research broader, looking to find
out the opinions of many people who live with the risk
of cancer so that they can guide how to best improve
NHS support to families. She is therefore inviting you
to take part in her research:
am a genetic counsellor but I have given up my job to
do a PhD to try and improve the way families are supported
by the NHS. I need to hear your views and experiences
of how you found out about FAP? I would like to know."
What information you were given at the time?
· What other information and support you might
· How you think information should be provided
(leaflets, email, via websites)?
fill in this short anonymous survey to help me find
out your views? Many thanks, Selina Goodman"
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