EUCERD publish reports on rare disease activity across Europe

The European Union Committee of Experts on Rare Diseases (EUCERD) has published its annual reportson the development ofRare Disease treatment and research across Europe.

The reports:
• explain the established political framework for European-level activity on rare diseases;
• examine the impact of the Cross Border Healthcare Directive for patients with rare diseases;
• highlight progress made by each EU Member State in developing and implementing national plans for rare diseases; and,
• explore best practice in rare disease policy from around the world.
 

The report demonstrates France as a leader in Europe in terms of the implementation of its Rare Disease Plan, followed by Portugal, Spain and Bulgaria. The European Council of Ministers has recommended all Member States have in place a plan or strategy for Rare Diseases by the end of 2013. The plans/strategies should seek to improve recognition and visibility of rare diseases, encourage more research, and forge links between centres of expertise and professionals in different countries through the creation of European Reference Networks. These Reference Networksshould share knowledge and expertise and, where necessary, identify where patients should go when such expertise cannot be made available to them in their home country.
EUCERD was established in 2009 and is charged with assisting the European Commission monitoring, evaluating and disseminating the results of measures taken at Community and national level in the field of rare diseases.

More information here