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This project is a collaboration between EURORDIS and:

• AFM (Association Française contre les Myopathies). Created in 1958, the French Muscular Dystrophy Association (AFM) is a non-profit association whose members include patients and families affected by neuromuscular diseases. Its mission is to find a cure for these diseases, most of which are of genetic origin, and assist people affected by them. Supported by the generosity of millions of donors, AFM supports more than 400 research programs each year and has contributed to the emergence of policies and structures dealing with rare diseases in France and Europe.www.afm-france.org

• BARRESTOWN is a specially designed camp, providing a programme of adventure, activities and fun - backed by the medical world - which helps children with serious illness regain their confidence and self-esteem. Barretstown provides challenging activity-based programmes for children affected by cancer and other serious illness and their families. These programmes are designed to re-build confidence, self-esteem, trust and courage, in a safe, fun and supportive environment.www.barretstown.org

• CLIMB is committed to fighting metabolic diseases through research, awareness and support. CLIMB is the UK's only dedicated organisation to provide advice, information and support on all metabolic diseases to children, young adults, families, carers and professionals. There are over 18 000 families affected by Metabolic Diseases in the UK over 38 000 throughout Europe. CLIMB is a national organisation working on behalf of children, young people, families, carers and support groups affected by metabolic diseases (genetic disorders). CLIMB currently provides information, advice and support on over 730 metabolic diseases.www.climb.org.uk

• FEDER, Federación Española de Enfermedades Raras, is a charity organisation which represents more than 90 rare diseases support groups in Spain. Since 1999 Feder has carried out activities to raise awareness on this health and social public problem, to support these families and improve their quality of life.www.enfermedades-raras.org

• FRAMBU is a national competence centre for rare disabilities (covering approx. 100 different rare diagnoses). Frambu is a government-funded health and assistance programme. Frambu is a meeting place for families and professionals. Frambu’s offerings span the entire life cycle from childhood to old age. Frambu will gather, develop and disseminate knowledge about rare disabilities for persons who have been diagnosed, their relatives and healthcare professionals, so that children, adolescents and adults with impaired abilities can live a life in harmony with their condition, aspirations and needs.www.fr

• FUNDACIÓ DOCTOR ROBERT (Doctor Robert Foundation) is a training and advanced-services centre for Health and Life Sciences promoted by the Universitat Autònoma de Barcelona (Autonomous University of Barcelona) and the sanitary institutions that are part of its the Board of Trustees. The institutional mission of the foundation is to contribute to the professional development of health and life sciences' organiszations by looking for the synergies among the academic world and the sanitary sector. www.fdrobert.org

• ORPHANET is a European database that deals with rare diseases and orphan drugs. ORPHANET aims to improve the diagnosis, care and treatment of patients. ORPHANET includes an encyclopaedia and a directory of services: specialised outpatient clinics, clinical laboratories, research activities and support groups.
• Dr. Segolène Aymé, Orphanet Director is the chair of the Task Force on Rare Diseases at the DG Sanco and member of the programme committee of the European conference on Rare Diseases 2007 in Lisbon.www.orpha.net

• RDD is an alliance of more than thirty national rare disease organisations. Rare Disorders Denmark works to improve the living conditions for people suffering from rare disorders and create a space for the mutual exchange of ideas and experiences. www.raredisorders.dk

• SUKL (State Agency for Drug Control, Czech Republic) is the regulatory body in the Czech Republic responsible for the regulation and surveillance of human medicinal products. It is also involved in the regulation and surveillance of medical devices.www.sukl.cz 4

In addition to the financial support received by the Public Health Programme of the European Commission DG SANCO, this project would not have been possible without the financial support of :

Sigma Tau Pharmaceuticals

We would like to thank in particular Greg Lapointe (Chief Operating Officer) and Wendy Perrow (Vice President, Marketing).

The Baxter International Foundation

We would like to thank in particular Celene Peurye (Executive Director of The Baxter International Foundation), Sophie Ludgate (Director, Government & Public Policy, Bioscience Europe) Jean-Marie Vlassembrouck (Vice-president Global Industry Affairs-BioScience), and Dr Christian Clauss (Director Global Regulatory Affairs NPD).

Groupe Initiatives Mutuelles UGIM

We would like to thank in particular Mathieu Lapprand (Medical Director).