Home > Meetings > Rome, 21-22 October 2013

2nd International Workshop

21-22 October 2013
Italian National Institute of Health – Viale Regina Elena, 299 - Rome (Italy)


Abstract Book

The 2nd International Workshop “Rare Diseases and Orphan Drug Registries” is organised in the framework of the EPIRARE project (“European Platform for Rare Disease Registries”, co-funded by EU Commission, DG SANCO).
It is open to scientists, clinicians, patients’ and parents’ Associations, policy makers and enterprises.
The Final Program of the Workshop will be based on the abstracts received.

The main aims of the workshop are:
  • (i) to share different experiences in the registration of rare diseases, including rare cancers and malformations, in Europe and beyond;
  • (ii) to highlight the strengths and opportunities of linking rare disease registries and other platforms being developed for research;
  • (iii) to promote networking of registries and contribute effectively to the strategies for the implementation of the common EU Platform for rare disease registries.


Abstracts are welcome on any subject and experience useful to inform and support the debate regarding the main aims of the workshop. It is expected that special interest will be dedicated to:
  • the contribution of registration activities to recent advancements in the natural history, epidemiology and pathogenesis of rare diseases as well as patient care and quality of life;
  • practical applications of registries, such as recruitment of patients in clinical trials, social and health service planning, patients’ support networks and integration with other initiatives, such as biobanks and databases for genomic and phenomic analysis;
  • lessons learned in the management of RD registries, e.g. regarding financial sustainability, quality assurance, ethical issues and patients’ confidence, data protection, ownership and accessibility, as well as patients’ contribution, involvement and advocacy initiatives;
  • the impact of e-health initiatives, new communication technologies and social networks.
Abstract submission process
  • 1. Authors should submit their abstract (more abstracts can be submitted) in English by 31 July 2013.
  • 2. The Scientific Committee will select submitted abstracts for oral and poster presentations. If the abstract is selected for oral or poster presentation at the Congress, the corresponding author must participate in the Workshop.
  • 3. Notification of acceptance will be sent to corresponding authors by e-mail by 10 September 2013.
Guidelines for abstracts and Posters

Registration is free of charge.
In order to organise the Workshop we will contact you by email at the beginning of September to confirm your participation.
If you don't confirm participation on that occasion we will not consider your request valid.


  • Deadline for Registration:
    due to many requests, we extended the deadline for Registration to 30 September 2013
    Due to organizational constraints and limited available places, registration after this date cannot not be guaranteed. Registration is carried out by filling the on-line form
  • Confirmation of registration: 7 October 2013
  • Deadline for abstract submission: 31 July 2013.Abstracts sent after the deadline of July 31 can only be accepted as posters.
  • Notification of abstract acceptance: 10 September 2013

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