Brussels, 17/11/2005 (Agence Europe) - On 11 November, the European Agency for the Evaluation of Medicinal Products (EMEA) published a call for manifestations of interest, aimed at patient associations and consumer organisations wishing to be represented in the working groups the Agency has set up. These working groups cover such aspects as information about medicines or the drafting of guidelines on the presentation and packaging of products. The next step will be for the Agency to select associations which will be invited to take part in these activities, on the basis of criteria approved by its Board of Governors on 29 September. These criteria focus mainly on legitimacy (nonprofitmaking organisations), the objectives in question, representativeness (the EMEA stresses that organisations must genuinely represent patients and consumers, but in the same time feels that this condition is automatically fulfilled by all organisations already registered with the EU Health Forum or with the Council of Europe), and transparency. The Agency believes that transparency should cover all of the organisation's activities, which must be regularly made public on the Internet, along with their sources of funding. The EMEA insists on being informed of any conflict of interest related to corporate sponsorship.
The debate on transparency relating to the many interest groups active at the level of the European Union has recently been brought back to the fore by Commissioner Siim Kallas (administration), who has recommended such action as obligatory registration and the introduction of a joint code of conduct (EUROPE 9066). Various patient organisations, such as EURORDIS, which represents associations which work in the field of rare diseases, support efforts made by the EMEA and the European Commission to step up transparency. In a written contribution to the Commission, EURORDIS has also stated that it would like to see a clearer distinction drawn between financial interest groups and genuinely nonprofitmaking organisations, expressing the needs and opinions of the citizens on various subjects. On representativeness, for example, EURORDIS points out that eight of the 12 members of its council of administration are the parents of children suffering from a rare disease, and that eight different nationalities are represented in this decision-making body. Financial independence, which is achieved by the diversity of its sources (public and private) of funding, is equally important, but this could be facilitated if organisations were able to enjoy additional funding for the work they carry out at European level. Above all, the institutions stressed the issue of funding sources, but EURORDIS believes that the decision-making process should be equally transparent. The written contribution by this organisation is available on its web site: http://www.eurordis.org