The 6th European Conference for Rare Diseases

The European Conference for Rare Diseases was organized at Brussels, by EURORDIS in partnership with DIA. In May 22-nd, took place Eurordis’ General Convention, where there have been presented the activity reports for 2011 and there have been organized elections for some positions in the Board of Directors. During the General Convention, the President of APWR, Dorica Dan, presented the work tasks related to EJA specialized social services in the field of the rare diseases, informing Eurordis members about the proposed activities.

ECRD Conference took place between 23-rd and 25-th of May 2012 and gathered more than 700 participants from 55 countries. Almost half of the participants have been patients’ representatives, one third were specialists, academicians and authorities’ representatives, the rest being representatives of the officinal industry and of biotechnologies.

Our presence at this event was important, as we had the opportunity to get more information about the rare diseases – politics, treatments, official innovations, research – and we shared experience with other European patient’s organizations.

Dorica Dan has led a session destined to the transition period from childhood to the adult age in the rare diseases. The conclusion of the seminary was that practically, at European level there is no expertise in this domain, due to the fact that until recently the patients having rare diseases haven’t reach the adult age.

There have been organized two events during which there were underlined the possibilities to meet the other participants and to lay the foundation of a further cooperation.

Zsuzsa Almási, RPWA