National Alliance for Rare Diseases in Romania (ANBRaRo)
The National Alliance for Rare Diseases of Romania (ANBRaRo) was established at the initiative of the Prader Willi Association in Romania in August 2007, through a project funded by CEE Trust. 32 founding members joined the founding of the Alliance: rare disease organizations and patient groups for which the disease is so rare that there is no association. ANBRaRo’s mission is to develop and carry out lobbying and advocacy activities to improve the quality of life of patients with rare diseases in Romania.
Purpose: To increase community responsibility towards patients affected by rare diseases by involving social actors in this field: patients, families, specialists and authorities.
General objective: to improve the quality of life of people with rare diseases in Romania.
• Developing a national network made up of key representatives of patient organizations, communities and public institutions;
• Proposing a national strategy for addressing rare diseases and implementing them in collaboration with the Ministry of Health – National Plan for Rare Diseases;
• Organizing information campaigns on rare diseases – annual Rare Disease Day, Conferences, Europlan Project;
• Creating and organizing training programs on addressing rare diseases (for all the social actors involved);
• Collaboration with organizations and private persons in the country and abroad, concerned about the same issue;
• Support and orientation of new groups and organizations.
At national level ANBRaRo is a member of COPAC.
At European level ANBRaRo is a member of EURORDIS (European Organization of Patients with Rare Diseases Organizations) and a member of the Council of National Alliances of Rare Diseases.