Who we are?

National Organisation for Rare Diseases of Serbia is non-profit umbrella patient organisation bringing together associations of people with specific rare diseases, as well as individuals wit ultra rare diseases.

NORBS was formed in 2010 with the main goal of improving the quality of life of people living with rare diseases in Serbia and advocating for their rights. People living with rare diseases in Serbia are unrecognized and, therefore, a vulnerable group of people. Currently NORBS’ has in its membership 33 patient associations with over 5000 members.

The mission of NORBS is to improve the position of persons living with rare diseases and persons with disabilities caused by a rare disease on the territory of the Republic of Serbia. The vision of NORBS is for this population to be recognised in the health and social protection system, to have access to the most modern diagnostic methods and methods of treatment and care, and for their representatives to participate as equal partners in all relevant bodies dealing with rare diseases. In accordance with the above mentioned, the main goal of the organisation is to improve the position and quality of life of persons living with rare diseases.

What we do?

NORBS’ programs and activities directly support the discriminated target groups, patients with rare diseases, especially children, due to the fact that most of these patients are children whose life duration is very short. NORBS’ activities include:

1. Awareness raising activities for the general public

2. Rare diseases advocates trainings and educations

3. Educating healthcare professionals on rare diseases

4. Advocacy and policy making – communicating with stakeholders

5. Regular participation in conferences and forums on rare diseases 6. Help Line – direct support and assistance to people living with rare diseases