Croatian Association for Rare Diseases

The Croatian Association for Rare Diseases is the umbrella organization for rare diseases in Croatia. Through the free line of help for rare diseases, 0800 9966, more than 1000 users are provided with help every year. Today, the Alliance brings together over 1,000 individual members, 31 associations, all of which include over 400 different rare diagnoses.

The association has existed since 2002 and has developed as a quality and responsible partner to patients and doctors and has given its contribution in the field of rare diseases in Croatia. In its work, the Association carries out numerous activities that include direct work with users, such as counselling on rights, psychological counselling, providing verified information on diagnosis and experts, connecting patients in Croatia and the world, providing support in exercising rights in institutions. The Alliance also works with social welfare and educational institutions, local health offices, educates stakeholders, raises awareness about rare diseases, and advocates for patients rights. In this way, it represents an example of the positive practice of the role of civil society in an integrated 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 disseminating knowledge, involving the community and carrying out concrete actions, it is in the common interest for better psychosocial, health, work, legal and other protection of patients with rare diseases, and the Alliance directs its activities so that the public recognizes the needs of this group.

CONTACT

Rare Diseases Croatia

Adresa: Ivanićgradska 38, RH-10000 Zagreb

WWW: www.rijetke-bolesti.hr

Tel. +385 1 2441 393

Mob. +385 91 444 3038

Faks +385 1 5534 905

Član EURORDIS-a | Member of EURORDIS


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Croatian Association for Rare Diseases