ERN biological samples in Rare Diseases research: Added value and usefulness

  • 12 June 2023 - 14:00
  • Madrid, Spain

General information
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. Biosamples managing is not an exception. The scarcity of biosamples for every RD and the risk of knowledge siloing or information duplication may be overcome by the strengthening of collaboration and dynamism of biosamples’ circuits including participation of all the stakeholders, to shorten the way and time from bench to bedside.

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 ERNs (European Reference Networks) biological samples repositories in the rare diseases (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 cover the high value of the ERN biological samples repositories in the rare diseases research, and ways to enhance their benefit across research networks. Different levels will be explored, from biological samples at the healthcare provider, to collaborative networks and a research ecosystem for the final benefit of patients and increase of knowledge on RD.

  • This training is composed of three days:
    The first day we will navigate through the ERNs experiences with biobanking, and the relationship with infrastructures as BBMRI and rare disease biobanking networks as EuroBioBank. Trainees will understand the context for collaboration and the analysis of the problem will start.
  • The second day will be dedicated to the PBL, with introductory and companion lectures to help the course of the exercise, and a session for solutions and discussion on the analysed problem.
  • The third day will serve as wrap-up of the training, containing lessons learned, and steps to achieve a comprehensive research ecosystem.

The training workshop will consist of plenary lectures and interactive small-group exercises, based to 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.

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. If you wish apply for a travel fellowship, please submit your application in the devoted section of the registration form by 20th April 2023.

Online registration form
Registration deadline is 26th April 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 26 April 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 28 April 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.

Instituto de Salud Carlos III (ISCIII), Madrid.

This Training workshop is organized by Instituto de Salud Carlos III (ISCIII) and Fondazione Telethon (FTELE).

If you have questions, please contact the course organisers through this email address: Rodrigo Sarmiento Suarez (

Please, indicate in the Subject: EJP RD Biobanking Training 2023


  • Start Date:12 June 2023
  • Start Time:14:00
  • End Date:14 June 2023
  • End Time:12:00
  • Location:Madrid, Spain