The Romanian National Alliance for Rare Diseases – RONARD – was established in 2007 through a project initiated by the Romanian Prader Willi Association as a non-governmental organization, an association.
It’s goal is to increase the awareness of the community on rare diseases through consensus building between different stakeholders involved in this field (patients, professionals, social workers, etc).
Main activities organized are: National Campaigns for Rare Disease Day every year, EUROPLAN conferences, other conferences at national and international level, trainings for its members and advocacy at national and European level for patients with rare diseases.
RONARD facilitates collaboration between all stakeholders to have a proper pathway for patients with rare diseases. We share and structure information and knowledge about available possibilities/ interventions / treatments and we work for shared guidelines for patient management, for proper health, social and educational services.
In the information campaigns, events and trainings we concentrate on the fields that offer a possibility for people living with rare diseases and their families to have a better quality of life.
RONARD has 38 members, patient organizations representing different rare diseases and organizations of professionals involved in the management of rare diseases.
We work with 2 paid staff and 10 volunteers. Our work is also supported by the staff and the volunteers of the member organizations.