Message from the Co-Chairs

On behalf of the European Organisation for Rare Diseases (EURORDIS) and DIA Europe, Middle East & Africa, it gives us great pleasure to invite all stakeholders involved in rare disease diagnosis, treatment and care to join us for the 8th European Conference on Rare Diseases & Orphan Products (ECRD 2016), in Edinburgh on 26-28 May 2016.

ECRD is the foremost meeting of the rare disease community and provides a unique platform across all rare diseases, across all European countries, and across all stakeholders. The ECRD brings together patients, caregivers and patients’ representatives; academics, scientists and researchers; payers and regulators; healthcare professionals, industry, policy-makers and representatives of the EU Member States. The first ECRD was held in Copenhagen almost 15 years ago, in 2001, and gathered more than 300 stakeholders from all interested parties in the rare disease community.

This groundbreaking initiative had such a positive impact that there has been an ECRD held in different EU countries every 2 years since then, which has allowed the rare disease community to gather to monitor and benchmark relevant initiatives, drive the policy framework around rare disease diagnosis, treatment and care and to empower the rare disease community to drive change where it is needed most. Outputs from the meetings have informed national and local policy initiatives and are referenced in decision-making around the provision of services for the community.

We invite you to be part of this year’s event. Please join us and more than 800 of your friends and colleagues from more than 40 countries to share good practice and to learn about new opportunities to improve support for rare disease patients and families from an ever-widening range of topics.

This conference will address the issues that matter today to rare disease patients and those who support them, and will also anticipate the needs of tomorrow’s rare disease patients and families so that innovative and sustainable responses can begin to be developed. No matter what your involvement in the rare disease sector is, the ECRD is the platform to bring your challenges, opportunities and commitment to build better outcomes together.

Today, rare diseases affect an estimated 30 million people in the EU alone. Due to the low prevalence, national policy-makers find it a real challenge to fully meet the needs of people with rare diseases. We can help them to help us by building understanding and identifying areas where action can make a real difference. Cross-EU collaboration also offers a unique opportunity to build a more comprehensive and effective approach by working together, because in each Member State, patients are facing the same problems and challenges of access to information, to diagnosis, to care, to medicinal products and to appropriate support. A shared approach can foster better and more effective outcomes by working together. In addition, increased awareness of rare diseases, as well as the opportunity to stimulate cooperation and knowledge-sharing at the EU level, are both of vital importance to ensure continuity and extension of health and related social policies on rare diseases across the EU.

After more than 20 years of work, developments in science and clinical care are coming together in a pan-European policy framework. The framework aims at reducing health inequalities, ensuring that rare disease patients can expect to be able to access services and support that reflect current scientific understanding and best clinical practice and that, where therapies exist, that they will not be unreasonably withheld. The ECRD gives us the platform to concretely demonstrate the importance of EU actions in the field of rare diseases and to allow us to review and evaluate progress to date.

The conference is structured with both plenary and parallel sessions addressing specific issues. The format is designed to encourage knowledge-sharing and debate, and we have integrated the exchange of real experiences and best practices into the programme. Most importantly, the opportunities to network and cooperate with peers and colleagues stimulates debate, builds awareness, secures continuity of action and avoids us duplicating any efforts where our resources are scarce and collaboration is key. Our thematic approach is also designed to allow us all to learn from each other, and where less advanced regions in a given field can benefit from experience sharing with other areas in Europe and globally.

The Opening & Plenary Sessions are interpreted from English into five languages: French, Spanish, German, Italian and Russian. A Poster Committee is responsible for selecting submitted posters. A Patient Advocates Fellowship Programme will be available to support the participation of up to 40 patient advocates.

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 2016, participants will enjoy ample opportunities to network and visit the vibrant and cultured city of Edinburgh. We hope you will be able to participate in ECRD 2016 and look forward to welcoming you to Scotland.



  • Wills Hughes-Wilson
  • Wills Hughes-Wilson
    Task Force RDs & ODs of EFPIA-EuropaBio, Member of DIA Advisory Council Europe, Sobi, Sweden
  • Alastair-Kent
  • Alastair Kent
  • Director, Genetic Alliance UK, UK
  • Bruno_Sepodes
  • Bruno Sepodes
  • Chair, COMP, Professor University of Lisbon, Portugal