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I think the level of the conference has increased significantly since the last ones I was
attending some time ago
I like very much the interaction between the different
stakeholders
and partners
in the field of rare diseases
Yeah I think it's interesting because you can see it both in the agenda and in the interventions how we are
moving from
the very beginning from the implementation of the Orphan Drug Regulation,
the problems of awareness now moving into something much more complex in terms
of okay
we're assessing now the
results of the implementation
of the Orphan Drug regulation
we're now discussing much more sort of
complex issues like
availability or access to products
we have now much more input from the
academia
I mean you can see in the poster session there are you know
lots of projects around so it's getting much more..[pause]..
it is evolving
So we are getting
more results more
complex issues which is nice also you the discussions about Health Technology Assessment
which you know is probably the future so
yeah very encouraging, because it's moving and that's also
defining the way the conference is moving in terms of content
in terms of participation.
You know I was in the one [session]
you know about
future development of orphan drugs
and also pretty interesting the one that I just went to
about
special projects for
care
of patients and networking
which is also I think a major work in rare diseases
and it's also extremely encouraging
to see how
projects are developed at
European level
how the support that has been there for years which
probably is not enough but still you know
bringing some results
that make a difference for patients.
I think it's a nice development because
I remember, it was like
two years ago I was invited by the
polish authorities to
to come here with Segolène [Segolène Aymé of Orpha.net]
in fact to Warsaw
and at that time we realized that there
are different problems
in the Central and East part of Europe
from the problems we have in France
or in the UK
and I think it's an important
I would say
it's
it's an important
I can't find the word but anyway [smiles]
..
it is important to show that
this exists
and also probably for the patients groups
in these countries it's important to understand what is
going on in other countries
what are the the problem that we have there and then
to share with them that their experience
Yes I think we must show support, we should increase awareness in this field.
Well it's a sort of test
and also
something that
gives us some reassurance that what
about we're doing
It's a test
to see how people understand what we're doing,
how people really analyze the effect of the implementation of the
Orphan Drug Regulation for instance.
It's also an opportunity
to see how
this has been perceived and how the work that you do
on a daily basis has an impact on
patients and on availability of products.
That is really rewarding
and so to see
how grateful people can be about that I mean that's wonderful
and it's nice then to
in the same place have the opportunity to have a chat with people that are
either patients or researchers or
policy makers.
It's a great opportunity