European Commission sets up new expert group on rare diseases

The European Commission (EC) has established a new expert group to advise European Union (EU) institutions and member states on how to tackle rare diseases.

The revamped group will replace an advisory board established in 2009, and will comply with new EU guidance on how such specialist bodies should operate.

Under a Commission decision approved in July, the new group will help the EC draft EU laws, guidelines and policies on treating and preventing rare diseases and drafting reports on specific rare disease problems, at Brussels’ request.

The group will also help the EC monitor existing laws and policies, advising on how they can be improved and implemented more effectively.

The new body will also advise the Commission on boosting international cooperation regarding combating rare diseases; provide assessments of relevant EU and member state policies; and encourage 'exchanges of relevant experience, policies and practices between member states' and other parties, said the regulation establishing the new group.

Pharma industry associations will have representatives on the group, along with regulators, medical professional bodies, academics and patients’ organisations. The regulation’s text argued that the new group would have a clearer mandate than its predecessor, operate with more transparency, better coordinate with other groups and work with less bureaucracy.