.:: What are Rare Diseases ?

Rare diseases are those affecting less than one person in 2 000. This translates to approximately 5 out of 10 000 people in the European Community (see Regulation (EC) n° 141/2000 of the European Parliament and Council of the 16th of December 1999 regarding the orphan medicines (Official Journal of the European Communities, 22/01/2000).
Eighty percent of rare diseases have a genetic origin. They are also called “orphan diseases” due to lack of economic interest of pharmaceutical companies to develop treatments for them. It is estimated that between 5 000 and 8 000 rare diseases exist today, affecting between 24 and 36 million people in the enlarged European Union.
Although these diseases are heterogeneous, they have common characteristics: they are often serious, chronically debilitating and progressive diseases with an impact on the vital prognosis; they also often generate disabilities and loss of autonomy that seriously compromise the patients’ quality of life.
Rare disease patients face common difficulties such as misdiagnosis or delays in diagnosis, inappropriate care and management and lack of social recognition.

.:: What is a bank ?

A bank, or a Biological Resource Centre (BRC), is a public or private non-profit organisation, which collects, prepares, stores and distributes biological material for research in compliance with the local and international regulations in force in this field.
In a document entitled: "Biological Resource Centres: Underpinning the Future of Life Science and Biotechnology" (March 2001), the OECD (Organisation for Economic Co-operation and Development) defines the Biological Resource Centres as "Service providers and repositories of living cells, genome of organisms and information relating to heredity and the functions of biological systems. BRCs contain culturable organisms (…), replicable parts of these (…), viable but not yet culturable organisms, cells and tissues, as well as databases containing molecular, physiological and structural information relevant to these collections and related bioinformatics."
EuroBioBank is a European network of human DNA, cell and tissue banks for research on rare diseases.

.:: What is a collection ?

A collection is a group of biological samples, or biological by-products, from identified persons selected on clinical and biological criteria. Collections can be presented by pathology or by type of biological material (DNA, tissue, cell).