Health ministers from the 27 member states of the EU agreed to devise and implement National Plans for Rare Diseases and Orphan Medicines, following recommendations by the Council of the European Union. The plans, to be carried out by 2013, come as part of efforts to speed development of new diagnostic procedures, increase access to treatments for rare diseases, and foster scientific networking.
Collaboration at the European level will also be encouraged to address other key issues such as minimizing delays in access to orphan medicines and creating Centres of Expertise, European networks, and pan-European patient registries.
The Council for the European Union is also pushing EU governments to pool scientific expertise to support best diagnostic and medical practice on a continent-wide scale. They believe that such networking will also provide the optimum training and education for health professionals and help develop European guidelines on diagnostic tests or population screening.
The Council estimates that some 6% to 8% of the population, or about 27 million to 36 million people, in the EU is affected by 5,000 to 8,000 rare diseases. However, it says that according to the Orphanet database, of the thousands of known rare diseases for which clinical identification is possible, only 250 have a code in the existing International Classification of Diseases (10th version). “An appropriate classification and codification of all rare diseases is necessary in order to give them the necessary visibility and recognition in national health systems,” the Council stressed in its report from the 2947th Enployment, Social Policy, Health and Consumer Affairs Council meeting.
NIH Starts Program to Develop Drugs for Rare and Neglected Diseases with $24M (May 25, 2009)
NDRI Receives Funding Commitment for Rare Disease Initiative (Dec. 5, 2006)