EU takes steps to improve treatment of rare diseases
This article was originally published in Scrip
The European Commissionhas adopted two documents setting out ways in which the EU member states can to help improve the diagnosis and treatment of rare diseases.
The aim of the Commission Communication and draft Council Recommendation is to get the member states to co-operate in bringing together the scarce resources that are currently fragmented across individual countries, the commission says.
The communication sets out a Community strategy for action in three main areas: improving the recognition and visibility of rare diseases; supporting member states' national plans; and strengthening co-operation and co-ordination on rare diseases at the European level.
Among its recommendations are setting up networks of centres of expertise in the various countries and making use of new information and communication technologies.
The commission announced the adoption of the Communication on November 11th, but as of midday it had still not put a link to the document on its website. Commission personnel were not immediately available because of the public holiday in Europe.
However, it is expected that the Communication will also address the question of inequalities in access to orphan medicines across the EU, which was raised in the consultation document issued by the commission in December 2007. It may suggest ways in which the member states might improve access, for example by allowing conditional pricing and reimbursement for newly approved drugs.
Patients and industry have been eagerly awaiting these two documents. Last month, Epposi, a partnership between patients, industry and academia, said EU governments had to take urgent action to address "shortfalls in the effective diagnosis, treatment and care" of patients with rare diseases, and that this was an "ideal opportunity" to do so.