List of organizations in countries








List of national associations

Association of citizens for the fight against rare diseases in children "Life"

Since 2010, the association has been very active in raising awareness about the problems of rare diseases, providing therapy and medical equipment, as well as improving the position in society of both those suffering from rare diseases and their families.


NORBS exists because of sufferers, cooperates with sufferers and works for sufferers of rare diseases. Reach out to them. The load is still lighter if you carry it with someone else

National Rare Diseases Alliance of Macedonia

With the establishment of the alliance in 2014, the first meeting of the Ministry of Health and 16 patient organizations was held, which marked the beginning of the initiative to solve the problem of rare diseases in Macedonia.

National Organization for Rare Diseases of Montenegro

The National Organization for Rare Diseases of Montenegro is a social-humanitarian association founded as a voluntary union of individuals suffering from rare diseases, their family members and citizen associations.

Croatian Association for Rare Diseases

The association has been in existence since 2002 and has developed as a quality and responsible partner for patients and doctors, and has contributed to the field of rare diseases in Croatia.

Association for Rare Diseases of the Republic of Srpska

The Association for Rare Diseases of Republika Srpska was founded in 2015 in Banja Luka by merging the association of people with rare diseases organized in the territory of Republika Srpska and legal representatives of people suffering from various rare diseases, as well as persons or family members suffering from rare diseases.

Association of Citizens for Rare Diseases "Life with Challenges"

The citizens' association for rare diseases "Life with challenges" was founded in 2009 and since then it has been advocating for the rights of patients with rare diseases and a better health system. The association is in contact with all patients and families who need help and together with them seeks solutions for all challenges.