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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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