Poland hosts rare diseases conference

The European Commission is set to unveil the road map for implementing action on rare diseases at the 5th European Conference on Rare Diseases (ECRD) Krakow meeting this week. Record numbers of participants have registered to attend the fifth ECRD, to be held on May 14 and 15 in Poland.

The 585 participants from 43 countries, 34 per cent of which are from Central and Eastern Europe, will gather to hear about progress in the year since the EU Council of Health Ministers adopted a strategy calling on Member States to implement national plans for rare diseases by the end of 2013.

The ECRD will bring together representatives of all rare diseases, all European countries and all stakeholders to discuss key policies and actions to improve lives. It will focus on the current situation in the different Member States.

This year, the event, entitled "From Policies to Effective Services for Patients", will present the most recent rare disease initiatives in the fields of research, healthcare, information and social services. Topics such as access to genetic testing and to cross-border healthcare in an enlarged Europe will be debated.

There will be a special session on Eastern Europe, focusing on centres of expertise and patient organisations' activities to develop national plans and strategies on rare diseases.

Further, Polish representatives from health authorities and rare disease patient organisations will talk about their experiences.

ECRD is organised by the European Organisation for Rare Diseases (EURORDIS) in partnership with Rare Disorders Denmark, the UK's NHS National Commissioning Group and the Fundacio Doctor Robert, Autonomous University of Barcelona and is primarily supported by the Public Health Programme of the European Commission.

About 30 million people suffer from a rare disease in Europe today and EURORDIS represents more than 400 rare disease organisations in 43 countries, covering more than 1,000 rare diseases.

For more details of the conference, visit the European Conference on Rare Diseases website