Managing RD biological sample data in Biobanks: lessons learned from the EJP RD training workshops

  • 13 December 2023 - 14:00
  • Milan, Italy

This training workshop is the conclusive event of a series of capacity building programs on biobanking put forth by the European Joint Programme on Rare Diseases.

The Rare disease (RD) field benefits from national and international multidisciplinary collaborations to face the challenges in research. Access to infrastructures, collaborative research and policy platforms, virtual platforms for data integration are some examples of means to overcome bottlenecks for diagnosis and treatment of RD patients. Biospecimens management is not an exception. The strengthening of collaboration and dynamism of human biosamples’ circuits including participation of all the stakeholders may optimise the diagnosis and treatment of the entire process of RDs from bench to bedside.

This face-to-face 2-day training workshop will consist of plenary lectures and interactive small-group exercises, based on the Problem-Based Learning (PBL) method. PBL is a highly interactive and learner-centred approach where the learning occurs by working in a small group assisted by a facilitator to develop a solution of a problem. Practical demonstration of biobank or sample catalogue related tools are also included. Participants are asked to bring their laptops in order to participate in the PBL and the practical demonstrations.

This training is aimed at biomedical researchers, medical professionals, and biobank managers who want to learn about the path to follow for exploiting the high value of the biological sample repositories in the RD research. The role of ERNs samples and how to optimise them for networking/ research networks is a basis for the development of the present course.

The present edition will offer to the attendees the possibility to develop the capacity on data management of biobanks, allowing them to optimise operations to support the need of RD research community.

The modules will be distributed as follows:
The first day, starting in the afternoon, will focus on plenary introductory and companion lectures to help the course of the exercise, and a session for solutions and discussion on the analysed problem followed by the PBL activity.
The second day, a morning session, will serve as wrap-up of the training, containing lessons learned also from the past workshop editions, and steps to achieve a comprehensive RD research ecosystem.

The training workshop is open to healthcare professionals, researchers, clinicians, biobank managers, database managers and rare disease patient advocates. In particular, we welcome participants from all types of biobanks (academic, hospital, private) with focuses on rare diseases.

To ensure active participation and exchange with teaching staff and fellow participants, a maximum of 25 participants will be admitted to the training workshop on first-come, first-served basis.

Travel Fellowships – Two travel fellowships are available to cover one round trip flights and up to two nights of hotel accommodation. We especially encourage participants from EU-13 countries and Turkey. If you wish apply for a travel fellowship, please submit your application in the devoted section of the registration form by 23rd October 2023.

Online registration form

Registration deadline is 23rd October 2023

IMPORTANT: To ensure active participation and exchange with teaching staff and participants, a limited number of participants will be admitted. A selection process will be applied by an ad-hoc committee (EJP RD representatives who organized the Training), using as selection criteria, the applicants’ backgrounds and their activities with reference to rare diseases research and/or biobanks.

A confirmation e-mail will be sent, by 27th October 2023 to the selected participants to the course.

Applicants who are not contacted by email should consider themselves not selected but will be kept on a waiting list until 30th October 2023.

The training and registration are free of charge.
The training organisers will not cover expenses incurred by the participants in any way, except for selected travel fellowships.

At the end of the training, participants will be requested to fill an online questionnaire as a feedback for learning and impact assessment.

A certificate of attendance will be given at the end to the participants who have attended the entire workshop. No credits of Continuing Education in Medicine will be issued.

The language of the training workshop is English.

Fondazione Telethon ETS, Via Carlo Poerio 14, 20129, Milan (Italy).

This Training workshop is organized by Fondazione Telethon (FTELE).
If you have questions, please contact the course organisers through this email address: Lorena Casareto ( and Irene Artuso (
Please, indicate in the Subject: EJP RD Biobanking Training 2023.


  • Start Date:13 December 2023
  • Start Time:14:00
  • End Date:14 December 2023
  • End Time:14:00
  • Location:Milan, Italy