Who We Are
National Organisation for Rare Diseases of Serbia is a non-profit umbrella organisation bringing together associations of people with specific rare diseases, as well as individuals with ultra rare diseases (diseases so rare that there are only a couple of registered patients in Serbia).
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’ members are 31 associations with over 5000 members. NORBS is being led by the Managing Board, consisting of 5 patients or parents of patients, and the Executive Director.
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:
- Awareness raising activities for the general public
- Rare diseases advocates trainins and educations
- Educating healthcare professionals on rare diseases
- Advocacy and policy making – communicating with stakeholders
- Regular participation in conferences and forums on rare diseases
- Help Line – direct support and assistance to people living with rare diseases