Jordi Llinares (EMA) attending the European Conference on Rare Diseases (Krakow, May 2010)

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