Rare
diseases:
from
a
community
to
data
We have developed an innovative approach to help communities in managing a data gathering process that generates new evidence for studies on rare diseases.
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The
importance
of
patients
in
the
research
process
Through the direct participation of patients we enable the aggregation of medical research data with those generated by patients, for a better understanding of the disease.
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We
give
value
to
communities
We facilitate the aggregation, management and financing of groups of patients and researchers. Gathering data directly from the community we help sharing knowledge.
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Technologies
and
processes
for
high
quality
data
Cloud-computing, state-of-the-art technologies and a complete view of the process are the enabling factors for security, collaboration and for the generation of quality data.
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For
a
more
effective
and
sustainable
research
We generate longitudinal data, until now unavailable, for studying the natural history of rare diseases and managing the long-term follow-up on as many patients as possible.
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