Dear Readers,
There is one thing Santa Claus or
anyone else cannot do for you, and that
you must write down, right now, at the
top of your Christmas list: " I shall
write my contribution to the
Public Consultation on the Commission
Communication on Rare Diseases"
before Christmas and send it to the
Commission"! This Public Consultation
has now been launched at the European
Conference on Rare Diseases 2007 Lisbon
on 26-27 November and is ongoing for 8
weeks.
You think it's not really any of your
business? You don't feel competent
enough? Think it's only in English? A
bureaucratic exercise? Your contribution
will have little impact? You feel it
takes too much time? I am sorry to tell
you that you're getting it all wrong!
The Draft Commission Communication is
a text of about 20 pages and it will be
translated in over 20 LANGUAGES to make
it easy to read and assess by everyone.
10 QUESTIONS are listed: you can answer
all of them, or only a few-or even just
one. You can make comments or write a
short letter of support. And you can
write in any of these 20 languages.
EVERYONE and ANYONE can send feedback to
this public consultation... And probably
ALL READERS of this Newsletter should be
personally or professionally concerned
enough to spare a few moments to write a
contribution.
As its name indicates, the
Communication concerns all rare diseases,
from the rarest to the most frequent or
best known. It is intended to cover all
possible policy on rare diseases:
research, medicines and other products,
healthcare organisation, information,
social support, patient groups; and
encompasses promotion of policies both
at community and national levels. All
stakeholders are invited to send a
contribution: patient groups,
researchers, health care and social
professionals, industry, Member States
AND ANY CITIZEN can send his or her
personal views. Contributions from
individuals or organisations from
European countries which are not EU
Member States are very welcome, as are
those from other parts of the world.
All contributions received by the
European Commission will be published on
their website and a synthesis will be
prepared in conjunction with the DG
Sanco Rare Disease Task Force. The final
version of the Communication will take
into account these contributions and
shall be adopted before year end 2008.
A "text" alone will not save lives? A
text boosting rare disease policies and
actions can save lives if it creates the
right public health framework. Rare
diseases are a new public health concept
to address the needs of millions of
people struggling with unmet medical
needs. It is still a malleable field
where every new policy or action, even
those with limited resources, has a
strong and structuring impact, and high
return. Because of the rarity of our
diseases, the added value of European
Community action is exceptionally high.
This Communication is one more step to
gain social recognition, unleash
energies and create new solutions
throughout Europe. It is already a step
in saving lives.
Yann Le Cam
Chief Executive Officer
