ROMANIAN NATIONAL ALLIANCE FOR RARE DISEASES City: Phone : +40260610033
The Romanian National Alliance for Rare Diseases - RONARD - was established in 2007 through a project initiated by the Romanian Prader Willi Association.
In 2008, on the first European Rare Disease Day, RONARD signed a partnership agreement, with the Ministry of Health, to implement a National Plan for Rare Diseases but, due to the political instability and socio economic challenges, it was postponed until 2013.
A new partnership agreement was signed in 2013 and a National Council for Rare Diseases has been officially appointed as an advisory committee of experts for the MoH for the implementation of the NPRD. RONARD has 3 full members in this council and is fully involved. NPRD is included in the National Strategy for health under adoption right now in Romania. 0n 2020 RONARD worked on updating the National Plan forRare Diseases.
Main activities organized are: National Campaigns for RDD every year, EUROPLAN conferences, other conferences at national and international level, organizational development for its own members and advocacy at national and European level for patients with RD.