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So I'm Tim Goodship I'm a
renal physician and I've been
working for nearly thirty years
looking after patients with all sorts of kidney disease but I'm also
a researcher
and one of my
major research interests over the last uh...
fifteen years has been a rare kidney disease called atypical hemolytic
uremic syndrome (aHUS)
and uh...
nearly twelve years ago we found
abnormalities in certain genes
in a pathway called compliment and uh... since then we've been following this
up and
these
findings have now resulted in
possibly a
a real effective treatment for
the disease atypical hemolytic uremic syndrome
so today we've been having a the first-ever patient family conference and uh...
we've had uh... over a hundred people
listening to a series of talks from
experts on the disease
from all over the UK
and it's been really good and it's has gone very well one of the things we've done in
each of the presentations where it's been appropriate we've had
patients talking about their experience so we've had
a lady talking about how aHUS has affected her family and
we've had
two individuals who received a new drug called eculizumab talking about their
experiences with the drug
we've had a gentleman who's had a liver/kidney transplant talking about
his experience with that procedure
and we had another man again who's had a very extensive family
talking about again how this has affected his family so
we feel it's been a really successful day there's been a lot of uh... audience
participation lots and lots of questions
about things and so it's been really good so
now we've got a way forward.
We've for some time wanted to establish
a patient action or support group and we've got
firm plans for how we can do this and
hopefully now this
aHUS conference will be a yearly event which we'll be holding
in different parts of the UK
It's been great!