Who we are?
We are a national umbrella non-profit organisation uniting 33 patient associations and over 5,000 individuals living with rare and ultra-rare diseases. Since 2010, our mission has been to improve quality of life, secure access to treatment, and advocate for the rights of people affected by rare diseases in Serbia.
Our Mission
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.
Our Vision
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’ training and education
- Educating healthcare professionals on rare diseases
- Advocacy and policy making – communicating with stakeholders
- Regular participation in conferences and forums on rare diseases 6. Help Line – direct support and assistance to people living with rare diseases
