Civil Society Completed

"Comprehensive support for women with rare disease challenges"

Rare Diseases Croatia ·Croatia

€86k

Grant awarded

Civil Society

Programme

1 September 2022

Signed

About this project

Women are often in an unfair social position, and if they also belong to a vulnerable group that struggles with rare health problems and underdeveloped support system, their marginalization and discrimination becomes even more complex! Problems occur in several aspects (social rights, psychological, medical) and are reflected in the functioning in business environment, private, social context. There is no systematized approach that would provide comprehensive support from different areas. The project introduces an innovative Case management (CM) model - a stable contact point, comprehensive, holistic, continuous, person-centered 1 on 1 approach, which includes a multidisciplinary team of experts and volunteers, providing legal, psychological, medical support and also information, education, networking, coordination of various external support resources. It is also the basis for data analyze in order to educate and raise public awareness and long-term sustainability. The project also influences external circumstances through conferences and public campaigns / advocacy - in order to create public predispositions for the inclusion of empowered women and their rights. Therefore, social community is aware of the real problems faced by women, leading to a more inclusive, equitable community ready to accept vulnerable groups. CM and research will be extended to less developed and regionally different areas, which enables multiplication and decentralization of available support, but also generalization to related target groups.

Bilateral cooperation results

The partnership with FRAMBU, a Norwegian competence center for rare diagnoses, greatly benefited the project. Through the exchange of knowledge, experiences, and best practices in the field of rare diseases, the quality of educational programs and support provided to patients improved significantly. FRAMBU’s involvement in educational workshops, sharing resources, and co-organizing events were key outcomes of the bilateral partnership. The project strengthened bilateral relations by fostering cooperation and dialogue on rare diseases, leading to better information exchange and enhanced support for those affected. FRAMBU’s expertise was instrumental in the planning and execution of project activities, providing valuable professional insights and support. The main results at the bilateral level included an enriched exchange of knowledge and experiences in working with rare diseases, an improvement in the quality of educational programs, and stronger international cooperation on the topic. The active participation of donor project partners helped ensure that the project's activities were well-planned and effectively implemented, leading to positive outcomes for both partners and the target groups. Looking ahead, there are plans to continue bilateral cooperation. This includes further exchanges of information, joint events, and participation in future projects, with the aim of maintaining support for those with rare diseases and raising awareness about these conditions. The partnership with donor organizations is expected to continue beyond the project’s end to sustain the support and further advance awareness of rare diseases.

Project partners

Frambu Resource Center for Rare Disorders Donor project partner· Norway
CESI Centre for Education, Counselling and Research Project partner· Croatia
Inclusive house Bell Project partner· Croatia
National organisation rare diseases Montenegro Project partner· Montenegro

Croatia country profile Other projects in this programme Project website