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So my name is Sue Huson and I'm based in Manchester, England at St. Mary's Hospital at the Academic
Health Science Center in Manchester. We have been fortunate--our Department of Health National
Commissioning have now funded Manchester to be one of two centers to look after people
with the most complicated form of NF 1--so those with awful plexiforms, who might have
sarcomas, who have optic gliomas, pseudarthrosis, for example. And then what is even more exciting
is that the UK Department of Health now funded care for the whole of NF 2 in England, so
we have four specialty centers and funding for all the scans, tests, clinic evaluations,
and for the vestibular schwannoma surgery and the implants. So we're hoping that that
is a real move forward so the clinics are in place as drugs come on-line. What's exciting
about having been co-chair of this year's meeting is really being able to get a sense
of what the Children's Tumor Foundation have achieved in the last five years because sometimes
in the past I'd thought that we did patient and family care a lot better through our association,
but now CTF are combining fantastic work with the scientists in increasing the speed for
drug development into translational research; and yet, along side, have got really good
patient information leaflets, family events, etc.