Alianta Nationala pentru Boli Rare din Romania (The National Alliance for Rare Diseases in Romania – AnBRaRo) and Asociatia Prader Willi Romania (The Prader Willi Association Romania – APWR)
October 5, 2009
The main purpose of the Alliance is representing the persons affected by rare diseases in Romania, their families and the organizations specialized in people affected by rare diseases.
The National Alliance for Rare Diseases in Romania and The Prader Willi Association Romania have supported and promoted at national level the EU strategy in the field of rare diseses: increasing the visibility of rare diseases; supporting national plans for the rare diseases in the Member States; improving cooperation and coordination in the field of rare diseases at European level.
Since its funding, AnBRaRo, together with the member organizations, have been facilitating the access to information in the field of rare diseases, have been creating a network of support between specialists and families, have been cooperating with international organizations and networks.
AnBRaRo is a member of Eurordis, thus together participating in influencing the national and EU decisions and public policies concerning the people affected by rare diseases. Without such organizations, the public health policy in Romania and the EU wouldn’t fully reflect the needs of the people affected by rare diseases.Author :