The European Organisation for Rare Diseases (EURORDIS) is a non-governmental federation of 340 rare disease organisations in 38 different countries (of which 29 are European) and covering over 1,200 rare diseases. It is therefore the voice of 30 million patients affected by rare diseases throughout Europe.

Founded in 1997, EURORDIS is dedicated to empowering people living with rare diseases in Europe and to improving their quality of life. It is supported by its member organisations and by the Association Française contre les Myopathies (AFM), the European Commission, as well as corporate foundations and the health industry.

Some of the EURORDIS’ activities include i) empowering rare disease patient groups, ii) advocating rare diseases as a public health issue, iii) raising rare disease awareness in the general public and also in national and international institutions, iv) improving access to information, treatment, care and support for people living with rare diseases v) promoting scientific and clinical research in rare diseases and vi) encouraging the development of rare disease treatment and orphan drugs.

Among its achievements, Eurordis has contributed to the adoption of the EU Regulation on Orphan Medicinal Products in 1999, to the EU Regulation on Paediatric Drugs in 2006 and to the EU Regulation on Advanced Therapies in 2007. Moreover, as it is a member of the Committee for Orphan Medicinal Products (COMP) at the European Medicines Agency (EMEA), EURORDIS has also contributed to the designation of over 570 orphan drugs. Further details concerning EURORDIS are available at: http://www.eurordis.org

Since 2001, EURORDIS has ensured the administrative coordination of EuroBioBank (www.eurobiobank.org), the European Network of DNA, Cell and Tissue Banks for Rare Diseases, a network composed of 12 biobanks from 7 EU countries. In this quality, EURORDIS joined the TREAT-NMD network of excellence as partner 11 and leader of Work Package 04.1 “Develop and manage supranational biobanks.”

The main objectives of WP04.1 include increasing the availability, exchange and use of quality human biomaterials for research on neuromuscular disorders and further developing neuromuscular biobanking activities. Through EURORDIS, the whole EuroBioBank network thus contributes its experience of the data and biomaterial management for research, to the TREAT-NMD project.

Dr Fabrizia Bignami has worked as Therapeutic Development Director at Eurordis since 2002. As such, she has been the administrative coordinator of the EuroBioBank network. In addition, she is a permanent observer and patient representatives’ supporter at the Committee for Orphan Medicinal Products (COMP), European Medicines Agency (EMEA) London, UK. A large part of her work focuses on presenting the rare disease patients’ point of view and defending their interest in the orphan drugs, advanced therapies and research fields at national and European level.

Anne-Mary Bodin has worked as Project Assistant at Eurordis since 2004. Part of her work involves assisting in the administrative and scientific coordination of the EuroBioBank network, implementing the objectives of WP04.1 and establishing contacts within TREAT-NMD and with other networks. She also assists Fabrizia Bignami in the organisation of international workshops focussed on rare diseases and orphan drug development issues.