History

The EuroBioBank network was established in 2001 by two patient organisations: Association Française contre les Myopathies (AFM) and the European Organisation for Rare Diseases (EURORDIS).

The idea of a network of European biobanks arose out of a particular context and a combination of events observed by the two organisations. These included: letters from families and patients affected by a rare disease offering to participate in research on their disease by giving a blood sample or other biological material. A number of scientific publications on rare diseases that underline the difficulties in finding biological material from "informative" families, a process that can take up to 10 years and consequently delays research. The creation of two biobanks - Généthon and Myobank-AFM (formerly Banque de Tissus pour la Recherche)- by the Association Française contre les Myopathies (AFM), as well as the emergence of French and European networks of biobanks.

The necessity to avoid wasting or losing biological materials, particularly when research activities cease, was of particular importance for rare diseases. The intensification of genomic research, which raises patients' hope of better diagnoses and new therapies, was driving an increase in the demand for biological samples. A meeting to create the EuroBioBank was held in Paris in 2001 with 16 founding partners:

1. European Organization for Rare Diseases
2. Association Française contre les Myopathies, France
3. Istituto Nazionale Neurologico Carlo Besta, Italy
4. Fundación para la Cooperación y Salud International Carlos III, Spain
5. Généthon, France
6. Centre de Génétique Humaine, Université Catholique Louvain, Belgium
7. University of Ljubljana, Slovenia
8. University of Malta, Malta
9. MTCC,  the Friedrich-Baur-Institut of the Ludwig-Maximilians-Universität, Germany
10. University of Campania "Luigi Vanvitelli", Italy
11. Fodor József National Center for Public Health, Hungary
12. Ospedale Maggiore Policlinico IRCCS, University of Milan, Italy
13. University of Padova, Italy
14. Bio Expertise Technologies (B.E.T.), France
15. Université Joseph Fourier, France
16. Teamlog SA, France