Editorial Orphan
The Spanish Health Minister announced the creation of a working group to develop a national strategy for rare diseases at a meeting held on 23 January. This meeting was attended by scientific experts, the Spanish Federation of rare diseases (ERDF), representatives of the Ministry of health, the General Secretary of health and the director of the research network of rare diseases (CIBERER).
Indeed, the experience ofboth CIBERER and the Research Institute of rare diseases (dependent of the Instituto de Salud Carlos III) will be incorporated into the debate. At the same time, they shall take into account to design these national strategy guidelines the recommendations of the Spanish Senate approved in 2007 as well as the communication from the EC on the European action in the field of rare diseases. The group will also include representative members of the autonomous communities.
It is expected that the activities and corresponding preparatory work will last at least one year. Patient organisations have received this piece of news with optimism and hope, but are aware that measures must be implemented by the new Government resulting from the general elections of March 9. They are acting as a “lobby” or group of pressure so that this agreement is not changed by the new Government. The development of such a strategy will put Spain on equal terms with other European countries (including Romania, Portugal, Italy and Greece) that developing specific plans for rare diseases.
In relation to the mentioned communication, there only remains two-weeks until the deadline to respond to this important document on the European action in the field of rare diseases, that still remains open for public consultation.
Rare diseases: Europe’s challenges is available in all languages of the European Union and will help those responsible of designing policies in order to define priorities and make informed decisions about strategies for rare diseases in the current and future programmes of health policies of the States members of the European Union. Your contribution to this document is vital to prove the interest level that exists across Europe to develop concrete actions in favour of patients with rare diseases and their families
