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Description
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.
Summary of project results
The project "Comprehensive support for women with rare disease challenges" aimed to tackle the challenges faced by women with rare diseases and mothers of children with rare diseases. These challenges affect many areas of their lives, including legal, psychological, and medical, and make it hard for them to manage work, family, and social situations. Many women don’t know their rights or have the ability to fight for them and often face roadblocks in the system and society. There is no unified support system that covers all these areas.
The project planned to improve the situation by introducing a new case management model that provides a stable point of contact and support from a team of experts and volunteers offering legal, psychological, medical help, and education. It also aimed to better understand the specific needs of these women through data collection and analysis, and to raise public awareness and ensure long-term solutions. The project also wanted to educate the public about rare diseases through a conference and advocacy campaign, helping to create better conditions for the inclusion and empowerment of these women and their rights.
The project focused on empowering women with rare diseases and mothers of children with rare diseases through a range of activities and outputs. It developed an innovative "Case Management" (CM) method based on European best practices. The project identified 70 women with complex needs and provided personalized support through a team of volunteers and experts. Volunteers, primarily psychology students, worked closely with the women, guided by a manual that was created to explain the methodology and outcomes of the project. The project included 10 group psychological workshops, 5 field interventions, and the creation of a handbook on case management.
The project also conducted a scientific study to better understand the challenges faced by the beneficiaries. This study was based on surveys, and the data were analyzed by a psychologist who produced a research paper highlighting their needs. Additionally, a public conference was organized to share knowledge and experiences related to rare diseases, and a public awareness campaign was run on social media to educate people about the issues these women face.
To ensure the project’s long-term sustainability, a model for fundraising was developed. The project also included regular team meetings, a launch and final conference, and several public communication activities, such as the creation of infographics and newsletters. Eight supervision sessions were organized for professionals involved in the project, and 10 experts were trained in public communication. The outputs included creating a sustainable support model for 70 women, conducting 1,000 support calls, organizing support groups and field interventions, and raising public awareness about the needs of those affected by rare diseases. The project ensured that professionals and volunteers gained valuable experience and that knowledge transfer was facilitated across generations.
The project achieved significant results for women with rare diseases and mothers of children with rare diseases, as well as for volunteers and partner organizations. One of the main outcomes for the women and mothers was an improvement in their quality of life, particularly through 1-on-1 psychosocial support. The case management model was key in providing structured assistance, helping these women navigate complex health, legal, and emotional challenges. The project also conducted a study to analyze their needs, which provided valuable insights and materials for raising public awareness.
For the volunteers, many of whom were students in fields like social work and speech therapy, the project offered practical experience working with vulnerable groups. They also benefited from the knowledge and expertise shared by more experienced professionals, gaining skills that will aid them in their future careers. This process of intergenerational knowledge transfer was a vital outcome, equipping younger professionals to support the social inclusion and empowerment of vulnerable groups.
The project’s international conference facilitated the exchange of expertise and experiences in the field of rare diseases, connecting participants with experts, patient organizations, and decision-makers. This networking created a foundation for future collaborations and initiatives. Additionally, the conference raised public awareness of rare diseases, a critical issue that many face in isolation.
For the organizations involved, such as the Croatian Alliance for Rare Diseases and partners like CESI, FRAMBU, ZVONO, and NORBCG, the project offered a comprehensive understanding of the needs of the target groups. It also led to the development of an educational module for the case management approach, as well as training in effective public communication and community work. The project strengthened collaboration among partner organizations and enhanced their capacity to continue working toward the project’s goals. Overall, the project provided widespread benefits, from direct support to individuals to building long-term organizational capacity and awareness.
Summary of bilateral 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.