Scopul nostru este sprijinirea şi promovarea cercetării ştiinţifice şi facilitarea comunicării între cercetătorii români din întreaga lume.
Autori: M. Puiu, A. Tarniceru, D. Dan
Editorial: nature publishing group, European journal of human genetics, Volume 16 Supplement 2 May 2008, p.425, 2008.
In Romania rare diseases are really orpheline. The project started by Romanian Prader Willi Association in 2007 (a project realized with the financial support of Trust for Civil Society in Central and Eastern Europe) induced multiple changes and it has a real chance that it’s main objective to be accomplished. This objective is to develop the awareness of the community regarding patients affected by rare diseases by involving the social actors from this domain: patients, families and specialists. In the same project it was founded Romanian National Alliance for Rare Diseases (RONARD) whose objectives are: to organize informational campaigns concerning rare diseases, to adopt a national strategy in approaching rare diseases, lobby and advocacy activities to transform these strategies in a National Plan for Rare Diseases approved by the Ministry of Health. Today Romania is much closer to the European system in approaching patients with rare diseases with the support and guidance of EURORDIS (European Organization for Rare Diseases), Orphanet (a database with information about rare diseases and orphan drugs) and the involvement of the Ministry of Health, Labor Ministry and Ministry of Education. The activities sustained by RONARD (courses, conferences, media messages) in the relationship with authorities, specialists, patients and their families, but also the civil society in general, will guarantee the necessary environment to create a social and medical system in which Romanian patients with rare diseases will benefit from diagnosis, treatment and care conditions similarly as patients from other European countries.
Cuvinte cheie: sistem de sanatate, boli rare, organizatia pacientului // health care system, rare diseases, patient's organization