Road map on rare diseases is unveiled

The European Commission is set to unveil a new road map for the implementation of the European action in the field of rare diseases this week.
An unprecedented number of participants from 43 countries across Europe have registered to attend the largest ever European Conference on Rare Diseases (ECRD), due to be held in Krakow, Poland this weekend (May 14 & 15, 2010).

A year after the adoption of a European strategy that calls upon Member States to implement national plans for rare diseases before the end of 2013, the ECRD will focus on the state of play in the different Member States. The ECRD is a unique forum that sees patient representatives of all the rare diseases from the majority of European countries gather with healthcare professionals, academics and policy makers to discuss key policies and actions to improve the lives of those affected by these conditions.
A rare disease is considered as such when it affects less than 2,000 people. Currently there is no cure for between 6,000 and 8,000 rare diseases identified, of which 75 per cent affect children. Due to the rareness of these conditions, information is scarce and research is invariable insufficient, with diagnosis delay, misdiagnosis and psychological burden major challenges for patients.
The conference will feature an event entitled ‘From Politics to Effective Services for Patients’, presenting 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 also be debated.
The ECRD is organised by the European Organisation for Rare Diseases (EURODIS), a body which represents more than 400 rare disease organisations, covering more than 1,000 rare diseases and providing a voice for 30 million patients in the EU.