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Rare diseases and orphan drug registries

The International Workshop “Rare Disease and Orphan Drug Registries” is organized 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 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 registration activities, orphan drug post-marketing surveillance, etc;
  • (iii) to promote the sustainability and networking of registration activities;
  • (iv) to share views in building up a common platform for registration activities devoted to research, public health and other purposes.


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 actions, such as biobanks and neonatal screening;
  • 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

Due to many requests, the deadline for abstract submission has been extended to August 16th, 2012.
You will receive notification of acceptance by September 5, 2012. Thank you!

  • 1. Authors should submit their abstract (more than one abstracts can be submitted) in English at following the link below indicating the surname of corresponding author and the title of the abstract.
  • 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 to the Congress.
  • 3. Notification of acceptance will be sent to corresponding authors by e-mail by
Guidelines for abstracts
  • Abstracts should be based on activities carried out within or with support of rare disease or orphan drug registries.
  • All abstracts should be submitted and presented in English.
  • Abstracts should contain no more than 400 words, except for: the title, full name and surname of authors with their affiliation, and references (max.3)
  • Tables, charts and figures should not be included in the abstracts.
  • Abstracts should only be submitted online


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