The Croatian Association for Rare Diseases is the umbrella organization for rare diseases in Croatia. Through the free helpline for rare diseases 0800 9966, assistance is provided to more than 1,000 users annually. Today, the association gathers over 1,000 individual members, 31 associations, and all of this includes over 400 different rare diagnoses.

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. In its work, the association carries out numerous activities that include direct work with users, such as counseling on rights, psychological counseling, providing verified information about diagnosis and experts, connecting patients in Croatia and the world, providing support in exercising rights in institutions. The association also cooperates with social welfare and educational institutions, local health offices, educates interest groups, raises awareness about rare diseases, and advocates patients’ rights. In this way, it represents an example of positive practice of the role of civil society in a unified approach to patients. Given that the Alliance for Rare Diseases has been operating for almost twenty years, it is one of the main sources of knowledge and information about rare diseases and life situations that patients and their families go through. By spreading knowledge, involving the community and carrying out specific actions of common interest for better psychosocial, health, labor, legal and other protection of those suffering from rare diseases, the association directs its activities so that the public recognizes the needs of this group of society.

CONTACT

Rare Diseases Croatia

Address: Ivanićgradska 38, RH-10000 Zagreb

WWW: www.rijetke-bolesti.hr

Phone. +385 1 2441 393

Mobile. +385 91 444 3038

Fax+385 1 5534 905

Member of EURORDIS