Message from the Co-Chairs

On behalf of the European Organisation for Rare Diseases (EURORDIS) and DIA Europe, it gives us great pleasure to invite all stakeholders involved in the rare disease environment to attend and participate in the 7th European Conference on Rare Diseases & Orphan Products (ECRD 2014 Berlin).

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, caregivers and patients’ representatives; academics, scientists and researchers; payers and regulators; health care professionals, industry, policy makers and representatives of the Member States. The first ECRD was held in Copenhagen in 2001, bringing together over 300 stakeholders from all interested parties in the rare disease community. Such a positive impact was achieved by this groundbreaking initiative that there has been an ECRD held in different member states at two year intervals since then, monitoring and benchmarking relevant initiatives and empowering the RD community.

ECRD 2014 aims at sustaining the dynamic of exchange of an increasing number of good practices, in a much broader spectrum of activities. The anticipated attendance at ECRD 2014 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 the low prevalence, national policy makers find it a very real challenge to fully meet the needs of people with rare diseases. However, the EU offers the unique opportunity to build a more comprehensive and effective approach since in each Member State, patients are facing the same problems and challenges: access to information, to diagnosis, to care, to medicinal products and to appropriate support. In addition, increased  awareness of rare diseases, as well as stimulating cooperation and knowledge-sharing at the EU level, are of vital importance to ensure continuity and extension of health and related social  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. It also acts as a platform to present key initiatives that will address the challenges of today to meet the needs of people with a rare disease tomorrow. For over two decades we have been identifying those needs and now, like the pieces of a puzzle, we are bringing them together to see the whole picture and bring a comprehensive rare disease policy to life across Europe.

With its plenary and parallel sessions addressing specific issues, knowledge-sharing and debate are  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, this thematic approach is designed to allow less advanced regions in this field to benefit from experience sharing with other areas in Europe.

The Opening & Plenary Sessions are interpreted from English into five languages: French, Spanish, German, Polish and Russian. A Poster Committee is responsible for selecting submitted posters. A Patient Advocates Fellowship Programme will be available to support the participation of patients from Central and Eastern European countries.

We will continue the initiative launched in 2012 of providing pre-conference capacity-building workshops for patients and patients’ representatives as well as tutorials designed for industry and academia.

Lastly, and by no means least, thanks to our host country for 2014, participants will enjoy ample opportunities to network and visit the vibrant and cultured city of Berlin. We hope you will be able to participate in ECRD 2014 and look forward to welcoming you to Germany.

Sincerely

  • Ségolène Aymé
  • Ségolène Aymé
  • Director International Affairs, Orphanet-Inserm, France
  • France Lesley Greene
  • Lesley Greene
  • Vice-Chair, COMP, Vice-President, CLIMBand Volunteer Patient Advocate, EURORDIS, UK
  • Wills Hughes-Wilson
  • Wills Hughes-Wilson
  • Chief Patient Access Officer and Vice President of External Affairs, sobi, Sweden