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EPIRARE workshops to empower professionals to design and manage a rare disease registry

Two interesting offers for next September and October

July 1 2013

EPIRARE

EPIRARE (European Platform for Rare Disease Registries) is a three-year project co-funded by the European Commission. Its main objective is to support the development of registers and databases on rare diseases for epidemiolocial purposes. One of EPIRARE’s lines of activity to achieve this objective is the organizations of courses and workshops to empower professionals to design and manage a rare disease registry, like the ones that will take place next September and October.

These are some of the most relevant educative activities suggested from EPIRARE for the next months:

  • International Summer School: "Rare Disease and orphan drug registries" (16-20 September 2013, Rome)

    The course will take the participants through the main concepts and practical steps that must be undertaken in the establishment and management of a rare disease registry to ensure its usefulness, soundness and sustainability. Deadline for application submission: 30 July 2013.

    For further information visit the ENERCA Agenda.
  • Rare Disease and Orphan Drug Registries, 2nd International Workshop (21-22 October 2013, Rome)

    The workshop aims to share different experiences in the registration of rare diseases in Europe and beyond; to highlight the strengths and opportunities of linking rare disease registries and other platforms being developed for research; and to promote networking of registries and contribute to the strategies for the implementation of the common EU Platform for rare disease registries.

    For further information visit the ENERCA Agenda.

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