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Starting date
and
duration of
project
- 15/12/2002
- 24 months
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Budget
Total cost:
208.004,36
Subsidy from
the Commission:
145.603,05
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Statement of the project's
aims
To improve and
disseminate expert knowledge on
medical issues in an emerging
group of patients: adult patients
with rare diseases. The issues
are common to many of these
diseases, allowing discussion and
evaluation on diagnosis and
treatment transcending the limits
of a single disease. The topics
are pregnancy, bone disease,
ophthalmologic disease,
neurological complications, new
treatment strategies, and
extended neonatal screening
programmes. Expert knowledge is
improved by quality-assessment of
currently fragments expertise by
expert-groups leading to a broad
consensus. Dissemination of the
new expertise occurs through
training sessions based on the
consensus. The review and
training sessions are designed
and held by European
professionals.
The new knowledge
and trainings will also be
distributed as hard copy, CDRom and
through the Internet, ensuring
adequate dissemination and access
for all professionals in Europe. In
addition, an electronic response
facility will be set up, answering
questions posed by professionals,
enabling direct and rapid
interaction with discussion of
detailed and practical
information.
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