Message from the Co-Chairs

On behalf of the European Organisation for Rare Diseases (EURORDIS) and the DIA Europe, it gives us great pleasure to invite all stakeholders involved in the rare disease environment to attend and participate in the 6th European Conference on Rare Diseases & Orphan Products (ECRD 2012).

ECRD is the foremost meeting of the rare disease community and a unique platform across all rare diseases, across all European countries, bringing together all stakeholders – patients and patients’ representatives, academics and researchers, health care professionals, industry, policy makers and representatives of the Member States. The anticipated attendance at ECRD 2012 is 700 participants representing over 40 countries from around Europe and beyond.

Today, an estimated 30 million people are affected by rare diseases in the EU. Due to this low prevalence, national policy makers are not in a position to well address patients’ needs. However, the EU offers the unique opportunity of a more comprehensive and effective approach to rare diseases. Indeed, in each Member State, patients are facing the same problems and challenges: access to information, to diagnosis, to care, to drugs and to appropriate support. Increasing awareness of rare diseases, as well as stimulating cooperation and knowledge-sharing at the EU level, are of great importance to ensure continuity and extension of policies on rare diseases in the EU.

To this end, the Conference is structured in such a way as to demonstrate the importance of EU actions in the field of rare diseases and review progress to date. With its plenary and parallel sessions addressing specific issues, knowledge-sharing is encouraged, the exchange of real experiences and best practices are integrated into the programme, cooperation and networking are stimulated and awareness is increased while ensuring continuity of action and prevention of duplication of efforts. Indeed, less advanced regions in this field will benefit from experience sharing with other areas in Europe.

The Opening & Plenary Sessions are interpreted into six languages: English, French, Spanish, German, Dutch and Russian. The Programme Committee (PC) is responsible for selecting submitted posters for poster board and oral presentations. A patient fellowship programme will be available to support the participation of patients from Central and Eastern European countries.

And new this year, patients will be given the opportunity to participate in pre-conference capacity-building workshops as well as tutorials designed for industry and academia.

Lastly, participants will enjoy ample opportunities to network and visit the vibrant and cultured city of Brussels – capital of the EU and symbol of Europe. We hope you will be able to participate in ECRD 2012 and look forward to welcoming you to Belgium.

Sincerely,

Kate Bushby
Newcastle University and National Health Service, UK

Avril Daly
Chair Rare Diseases Ireland, Ireland

Kerstin Westermark
Medical Products Agency, Sweden