What started off as an European event, first launched by EURORDIS and its Council of National Alliances in 2008 with USA joining in 2009, is now a worldwide “mobilization”, inspiring thousands of other related events on a global scale.

The theme of Rare Disease Day 2015 is “Living with a rare disease” – paying tribute to the millions of people whose lives are affected by a rare disease and also to their families, friends and loved ones, who stand by them and support them every step of the way. Indeed, the slogan Day-by-day, hand-in-hand of the Official Rare Disease Day 2015 Video evokes the solidarity between families, patient organisations and communities.

DEEP welcomes and meets the concepts of this campaign by becoming a friend of Rare Disease Day and showing its support on its official website. This year Rare Disease Day encourages us to continue finding ways to work together to provide the different kinds of care to people living with thalassaemia and to push the boarders of research slightly further from its already encouraging progresses.

The article, entitled “Rare diseases and Paediatrics: the goals of the Consorzio per Valutazioni Biologiche e Farmacologiche – Clinical Trial, development of new methodologies and innovative drugs”, is an interview to Donato Bonifazi (CEO of CVBF), who has outlined the main areas of interest and the activities undertaken by CVBF. Among the activities and the European initiatives coordinated by the Consortium in the field of paediatric clinical research, it was mentioned also the DEEP study, and the effort of both the European and non-European Countries of the Mediterranean area, participating in the trial, in order to demonstrate the safety and efficacy of deferiprone even in the smallest patients. In this scenario, explains Dr. Bonifazi, a special attention is given to Albania, for the potentials that this country offers in clinical research (and especially in paediatrics).

Finally the article has highlighted one of the main goals of the Consortium and the partners involved, consisting in the promotion of a European infrastructure of paediatric research, to encourage the connections and  the enhancement of research activities, thus contributing to the business development of the paediatric field in Europe.

Here you can download the complete article.