Rare Disease Biobanks: Roles in Research Networks and International Collaborations

  • 10 May 2021 - 12:30
  • Online

10-11 May 2021 – Online Training


Online registration form

Registration deadline is 13 April 2021

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 2021, 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 3 May 2021.


RDs is one area where national and international multidisciplinary collaborations are valuable to overcome some of the present 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. One of such infrastructures are biobanks which are important drivers for creating scientific knowledge by collecting, storing and distributing human biological samples and associated data with quality assurance management systems and following ethical and legal guidelines.


The aim of the present training workshop is to emphasize the need for rare disease biobank networks to overcome sample scarcity and to draw attention to some of the challenges for collaborative research but at the same time also give examples of platforms, infrastructures and national activities that are catalysing national and international collaborations. It is hoped that at the end of this training course, lectures will highlight a checklist for the attendants as a guideline for biobank networks and research.

This training is addressed to beginners.

This training is made of two modules:

The first module will assess the important contribution of collaborations at national and international level for research on rare diseases and the pivotal role biobanks play. Local experiences and RD Biobanks in national plans will be described. To be able to harmonize networking activities main challenges that need to be overcome will be taken up. Lectures will take up subjects involving ELSI topics such as informed consent types, quality assurance programs and the new ISO standards, FAIR data principles for data sharing and GDPR and its role in the context of biobank samples and data usage.

In the second module, lectures are organized to give an overview of already functioning networks in research demonstrating some solutions to the challenges taken up in the first module. Presentations will provide examples of cross-border collaborations, biobanks in European Reference Networks (ERNs), virtual resources created for biobank research through EJP RD.  Finally, a hands-on example of a transnational collaboration in research will be given by a project approved through Pillar 1 of EJP RD.


The training workshop is organized as a series of webinars and lectures presented by experts in the specific topics. Interaction between participants and lecturers will be facilitated by moderated question & answer sessions.


The workshop is open to the international research community, clinicians, medical specialists, RD biobank managers, healthcare professionals and RD patient representatives.


The training and registration are free of charge.

The training organisers will not cover expenses incurred by the participants in any way.


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 attended the entire workshop. No credits of Continuing Education in Medicine will be issued.


The language of the training workshop is English.


Online. Details for the connection will be provided in advance to confirmed participants.


This Training workshop is organized by Hacettepe University Biobank for Rare Diseases (HUGEN) and Fondazione Telethon (FTELE). Additional partners in the training series are BBMRI-ERIC, Charité – Universitatsmedizin Berlin, Medical University Gdansk Poland, University Medical Centre Groningen the Netherlands and Vilnius University Hospital Lithuania.

If you have questions, please contact the course organisers through this email address: Ece Akhan  eceakhan@hacettepe.edu.tr

Please, indicate in the Subject: Training on Biobanking for RD



  • Start Date:10 May 2021
  • Start Time:12:30
  • End Date:11 May 2021
  • End Time:15:00
  • Location:Online