The European Organisation for Rare Diseases (EURORDIS) is a non-governmental federation of nearly 480 rare disease organisations in 45 different countries (of which 25 are EU member states), 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 a member of the Committee for Orphan Medicinal Products (COMP) at the European Medicines Agency (EMA), EURORDIS has also contributed to the designation of over 700 orphan drugs. Further details concerning EURORDIS are available at:

Since 2001, EURORDIS has ensured the administrative coordination of EuroBioBank, the European Network of DNA, Cell and Tissue Banks for Rare Diseases, a network composed of 16 biobanks from 8 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.




Fabrizia Bignami Fabrizia Bignami

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 at the Committee for Orphan Medicinal Products (COMP) & and a patient representative member at the Committee for Advanced Therapies (CAT), European Medicines Agency (EMA) London, UK.

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Anne-Mary Bodin Anne-Mary Bodin

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.

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Yann le Cam Yann le Cam

Yann Le Cam is a patients' association advocate who has dedicated 20 years of professional and personal commitment to health and medical research nongovernmental organisations in France, Europe and the United States in the fields of cancer, HIV/AIDS and rare diseases.

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Monica Ensini Monica Ensini


Anna Kole Anna Kole

Anna Kole is Registry and Biobank Projects Manager at the European Organisation for Rare Diseases (EURORDIS), a non-governmental patient-driven alliance representing the voice of people affected by rare diseases throughout Europe.  She manages EURORDIS' participation in projects focused on patient registries, biobanks, clinical bioinformatics, and –omics in an effort to empower patients and their representatives as active participants in the research process.

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