Djelatnici Saveza

Sara Bajlo M.Sc.Econ., President

Operational management of the Alliance, including stakeholder engagement, media relations, marketing activities, awareness-raising campaigns, and advocacy on behalf of rare disease patients.

Suzana Novak, M.A.Soc. Project Manager

Preparation of project documentation, administration, and coordination of project implementation. 

Nikolina Čović B.A. Soc.Wk, Social Worker

Information on rights. Counseling, assistance, and support related to the realization of social welfare rights. Protection of the rights of people living with rare diseases. Monitoring changes in laws and regulations and providing recommendations to safeguard existing rights and introduce new rights for individuals affected by rare diseases.

Ivana Hrastar M.Soc.Wk., Social Worker

Collaboration and coordination with Social Welfare Centers and institutions in the fields of social care, healthcare, and education. Participation in working groups, professional conferences, and both national and international forums with the aim of advocating for and promoting the rights of individuals living with rare diseases. 

Laura Martinić / Željka Koprivnjak M.A. Psych., Psychologist

Individual and group psychological counseling (in person, by phone, and online), psychoeducational workshops, webinars, and training sessions for individuals living with rare diseases. Emotional support and empowerment for individual members of the Alliance and their family members. Development of psychoeducational texts and materials aimed at educating and supporting patients and their families. Collaboration with member organizations through organized lectures, seminars, training sessions, and the creation of psychoeducational brochures tailored to the needs of specific member organizations.