NORBS

NORBS

NORBS was founded on July 23, 2010. as a union of associations dealing with issues of people with rare diseases and members of their families.NORBS is a voluntary, humanitarian, non-political, non-governmental and non-profit organization of people with rare diseases and members of their families. NORBS consists of 31 associations of patients with rare diseases and more than 200 individual members suffering from ultra-rare diseases - a total of over 5,000 members with over 250 different diagnoses.

The vision of NORBS is for this population to be recognized in the health and social protection systems, to have access to the most modern diagnostic methods and methods of treatment and care, as well as for their representatives to participate as equal partners in all relevant bodies dealing with rare diseases. Following the above, the main goal of the organization is to improve the position and quality of life of this population.

The goals of NORBS are:

  • Unified representation of the interests of persons with rare diseases and persons with disabilities caused by a rare disease in Serbia and unique appearance before decision-makers and other actors in society;

  • Protection and realization of basic human rights, elimination of discrimination and realization of equality, equality and social inclusion;

  • Advocating for decision-makers in Serbia to accept and apply international and European standards, principles and documents in the field of rare diseases, to provide persons with rare diseases and persons with disabilities resulting from rare diseases with the highest possible quality of life;

  • Advocating for the adoption and implementation of national policy in the field of rare diseases and the reform of national legislation by the needs and interests of persons with rare diseases and persons with disabilities resulting from rare diseases;

  • Advocating for the adoption and implementation of national policy in the field of rare diseases and the reform of national legislation by the needs and interests of persons with rare diseases and persons with disabilities resulting from rare diseases;

To achieve its goals, NORBS carries out the following activities:

  • Activities aimed at raising public awareness of rare diseases;

  • Training and education for representatives of patient associations;

  • Education of health workers about rare diseases;

  • Education of health workers about rare diseases;

  • Education of health workers about rare diseases;

Contact data:

Helpline: 0800 333 103 / linijapomoci@norbs.rs

Adresa: Đušina 10, lokal 6, 11000 Beograd

Email: office@norbs.rs

NORBS exists BECAUSE of patients, cooperates WITH patients and works FOR patients with rare diseases. Contact them. The load is lighter though if you carry it with someone else.

Members of the NORBS are the following associations:

NORBS is a member of the European Organization for Rare Diseases – EURORDIS and Rare Disease International.


Follow them
NORBS