WHO WE ARE

The initiator of this action is Croatian Alliance for Rare Diseases, in cooperation with National Organization for Rare Diseases of Serbia, but in time the action widen to a lot of other organizations from many different countries.

Croatian Alliance for Rare Diseases is the umbrella non-profit organization for rare diseases in Croatia, which gathers other associations with members with rare diseases and individual members, people living with rare diseases and their family members.

The Alliance gets together:

The main goal of the Alliance to improve the quality of life of people living with rare diseases and their family members, by providing them reliable information about their rare disease, ways of treatment, medical experts and expert centers but also by providing them psychosocial support and helping them in obtaining their social and medical rights.

As there is a lack of information about rare diseases, one of the most important activities is raising awareness about rare diseases, by marking Rare Diseases Day and other important dates. Also, the Alliance organizes conferences, seminars, round tables and different educational activities for its members but also for the general public and for professionals from different fields connected with rare diseases.

National Organization for Rare Diseases of 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. NORBS is umbrella organization that brings together associations of people with specific rare diseases or groups of rare diseases, as well as individuals with very rare diseases (diseases so rare that there are only a couple of registered patients in Serbia).

As umbrella organization for rare diseases in Serbia, NORBS gets together:

In the past three years, activities of NORBS covered four general directions: