The VISION of the Romanian National Alliance for Rare Diseases (RONARD) is a world that gives a normal life to patients with rare diseases in Romania.

Our MISSION is to develop and carry out lobbying activities and advocacy to improve the quality of life of patients with rare diseases in Romania through the empowerment and involvement of social actors in this area: patients, families, professionals and decision factors.

The GENERAL OBJECTIVE is to improve quality of life for people with rare diseases in Romania.

SPECIFIC OBJECTIVES

• Implementation of the National Plan for Rare Diseases in Romania and its inclusion in the national strategy for public health;
• Public awareness to the problems of children and adults with disabilities caused by rare diseases, to protect them and assure their integration in society;
• Establishment of a joint alliance of members on various issues of particular rare diseases in Romania with guidelines aimed at European level;
• Promoting equal opportunities and access to treatment and services, medical patients with rare diseases.
• Developing and promoting a national network consisting of key representatives of patient organizations, experts, and community and public institutions;
• Attracting funds and influencing the economic and administrative structures for the adoption of decisions in the future;
• Stimulating scientific research in the field of rare diseases - for identifying and implementing the most effective treatments and methods of care;
• Working with organizations and individuals in the country and abroad, dealing with this issue;
• Promoting development of new services for patients with rare diseases in Romania.

Other details at:

• www.bolirareromania.ro
• www.ziuabolilorrare.wordpress.com
• www.anbraro.wordpress.com
• www.apwromania.ro