The National Patients’ Organisation was established in January 2010 in Bulgaria as an association of legal entities – patient organizations. An NGO is registered under the Non-profit Legal Entities Act for carrying out activities in public benefit.
In just a few days after the association’s inception, it was joined by 20 national patient organizations and 15 regionally operating associations. This made the NGO the largest patient association in Bulgaria.
Today, the number of full members and regional representatives of NGOs exceeds 80.
The formation of the National Patients’ Organisation is a result of the urgent need for a strong and united patient voice to defend the interests of each patient, regardless of his disease, gender, age, ethnicity, religion, sexuality, political affiliation. The NGO will give the Bulgarian patient the opportunity to defend and fight for their rights, to enter into a dialogue with the institutions and to take its rightful place in society and the health system.
A national patient organization was created to unite the patient’s voice and to represent and protect the interests of all patients. The main goals of NGOs are: development and validation of civic participation in the management and control of the health system, introduction of the principle of equal tripartite partnership between state bodies, organizations of medical specialists, patients’ associations in the development and adoption of strategies, criteria and norms, introduction of policies and practices in the healthcare system, involvement of patient representatives in the management of structures in the healthcare system and development, introduction and validation of ethical norms and rules in the work of patient organizations, as well as their interaction with institutions, media and society.
Role in the PERSIST project
Scientific and administrative Management and Coordination, PERSIST specifications and methodology, Multimodal sensing network for data gathering and patient self-care empowerment, Multicentre clinical study, Privacy, security, and ethics: framework and management, PERSIST awareness raising activities and business development