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About us | Mission | Goals | Catalogue | Ethics | History | New challenges
.:: What is the EuroBioBank network ?
The EuroBioBank network is the first operating network of biobanks in Europe providing human DNA, cell and tissue samples as a service to the scientific community conducting research on rare diseases. It is the only network dedicated to rare disease research in Europe.

• About 130,000 samples are available across the network and can be requested via the online catalogue. Approximately 13,000 samples are collected each year and 7,000 samples distributed in Europe and beyond. The biological samples are obtained from patients affected by rare diseases, including rare neuromuscular disorders.

• The EuroBioBank Network is currently composed of 25 members, of which 21 biobanks from 9 European countries (France, Germany, Hungary, Italy, Malta, Slovenia, Spain, United-Kingdom and Turkey) as well as Israel and Canada.

• EuroBioBank is coordinated by FONDAZIONE TELETHON (Italy) for the administrative activities, under the responsibility of Mary Wang and Lucia Monaco.

Dr Marina Mora (Besta Inst., IT) has been coordinating the scientific activities of the network since 2013.

Funding and Collaboration

Originally funded by the EC between 2003-2006, the EuroBioBank received further EC support between 2007-2011 within the European Network of Excellence TREAT-NMD (FP6), which covered the cost sustained by Eurordis for the network coordination and website hosting. Each biobank of the network is financed by its own Institution or charitable organization. As of January 2012, the Fondazione Telethon provides the administrative support for coordinating the EuroBioBank network and hosting the website.
Moreover, BBMRI is an active collaborator of EuroBioBank.

:: Mission

Rare diseases are devastating and patients urgently need treatments and better care. By creating a critical mass of collections and facilitating the exchange of biological material, the EuroBioBank network helps accelerate research on these diseases. Samples are provided for selected research projects, the outcomes of which generally result in scientific publications listed on the EuroBioBank website.

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.:: Goals

  • Identify and localise biological material of interest to researchers

  • Build a critical mass of rare disease sample collections

  • Distribute high quality material and associated data to users

  • Promote best-practice guidelines for biobanking activities

  • Disseminate knowledge and know-how to the scientific community through training courses

  • Enhance collaboration with the medical and scientific community in the field of rare diseases
.:: Catalogue of samples

The network was established by patients and researchers to facilitate research on rare diseases by guaranteeing quick and easy access to samples via an online catalogue.

The catalogue lists the samples available throughout the EuroBioBank network by type of biomaterial. A search engine enables a search by disease or by bank contact.

Once a sample has been located in the catalogue, it can be requested by email. Therefore, the biological material is exchanged faster.

If a sample does not appear in the EuroBioBank catalogue, help can be provided to further search it at: eurobiobank@telethon.it

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.:: Ethics

The EuroBioBank network and independent experts have addressed the ethical issues relating to biobanking activities and developed several documents, available on this website:

- Informed Consent form

- Material Transfer Agreement form

- Ethical Guidelines for Biobanks

- EuroBioBank Network Charter

.:: 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), who has since coordinated the network up to 2011. From 2012 FONDAZIONE TELETHON has taken the responsability of the Eurobiobank's coordination.

Background :

The idea of a network of European biobanks arose out of a particular context and a combination of events :

  • 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.

  • 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 necessity to avoid wasting or loosing samples, particularly when research activities cease.

  • The intensification of genomic research which raises patients' hope of better diagnoses and new therapies.

  • 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.

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Opportunities and EC-funded project :

Opportunities arose with the European 5th Framework Programme for Research and Development entitled "Quality of Life and Management of Living Resources" 1998-2002. A project proposal submitted under action line 14.1 "Support for Research Infrastructures" was accepted for negotiations and the contract signed on 11th December 2002 under Proposal N° QLRI-CT-2002-02769. A total budget of 1 220 000 euros was granted by the European Commission for 36 months, starting 1st January 2003 to 31st December 2005. The project period was later exceptionally extended for an extra 3 months, until 31st March 2006.

.:: New Challenges
Since its involvement in TREAT-NMD, the EuroBioBank network has particularly focussed on:

  • Improving operating procedures for the exchange and use of samples

  • Implementing quality control

  • Enhancing the quality of the online catalogue entries

  • Assessing customer satisfaction

  • Attracting new members

  • Disseminating information about EuroBioBank
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