EAHP on Rare Disease Day 2014: ALL European countries should have a rare disease plan

On the occasion of World Rare Disease Day (28 February), Dr Roberto Frontini, president of the European Association of Hospital Pharmacists (EAHP), has added his voice to calls for all European countries to design and implement national rare disease plans.

A 2009 European Council Recommendation encouraged all member states to define and implement national strategies to improve the situation of citizens living with a rare disease by the end of 2013. However at the beginning of 2014 only 19 of the EU’s 28 member countries have published and shared such plans.

Dr Frontini described the situation as “regrettable” and urged the remaining national health systems to make meeting the 2009 Recommendation a greater priority: “Hospital pharmacy should be a key part of national plans on rare disease, for example, in ensuring efficient discharge and interface management of medicines, and enabling patients to receive individually prepared medicines - together with the information that they need to use them effectively.

"Hospital pharmacy is also central to improving the pan-European research knowledge base in rare disease. Rare disease treatment and the conduct of clinical trials are central parts of our professional specialisation.”

Speaking more widely, Frontini added: “The theme of this year’s Rare Disease Day, ‘join together for better care’, is an excellent motif for the way we need to work together to deliver better care for rare disease patients. It reminds of the need for health professionals to work more collaboratively across disciplines, and the need for European countries to combine resource and expertise in rare disease treatment.

"I hope the spirit of co-operation between national health systems that was central to the 2009 Recommendation can be met by its realisation in full, and further progress made from there.”

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