Active Citizens Fund – ACF

WOMEN'S VOICE FOR THE SYSTEM! Comprehensive Support and Empowerment of Women Facing the Challenges of Rare Diseases

Project Description:

Rare diseases affect fewer than 5 in 10,000 people. They encompass a broad spectrum of conditions about which both medical professionals and the general public often lack sufficient knowledge. Consequently, psychosocial support and other necessary forms of assistance for affected individuals are not well-developed or organized, which significantly reduces their quality of life. The Croatian Alliance for Rare Diseases provides psychological support, counselling on legal rights, occupational therapy, and advocacy for the rights of people living with rare diseases.

Through many years of work, we have observed that challenges are particularly pronounced for women living with rare diseases and mothers of children with developmental difficulties. The legal, psychological, and medical issues they face impact both their private and professional lives, and they often encounter systemic obstacles and societal stigma. To provide them with comprehensive support, the Croatian Alliance for Rare Diseases launched the project WOMEN'S VOICE FOR THE SYSTEM! Comprehensive support and empowerment of women facing the challenges of rare diseases,” funded by the Active Citizens Fund.

The project introduces the Case management model—a stable point of contact offering a comprehensive, holistic, continuous, and person-centered one-on-one approach. It involves a multidisciplinary team of professionals and volunteers who provide legal, psychological, and medical support, as well as information, education, and networking opportunities. This model will also be implemented by the partner organization Inkluzivna kuća Zvono, thereby decentralizing services and support for women living with rare diseases or caring for children with disabilities, and making them more accessible in less developed regions.

The project also includes research into the problems and needs of women living with rare diseases and mothers of children with developmental difficulties. This research will form the basis for a situation analysis, with preparatory support from partner organization CESI based on its extensive experience. In addition to the Croatian Alliance for Rare Diseases, the research will be conducted by the project partners Inclusive House “Zvono” and the National Organization for Rare Diseases of Montenegro (NORBCG), providing insight into the issue across different regional contexts and creating a foundation for advocacy in public policy. CESIIn addition to the Croatian Alliance for Rare Diseases, the research will be conducted by the project partners Inclusive House “Zvono” and the National Organization for Rare Diseases of Montenegro (NORBCG) Inclusive House Zvono i National Organization for Rare Diseases of Montenegro (NORBCG)providing insight into the issue across different regional contexts and creating a foundation for advocacy in public policy. Advocacy activities within the project will include an international conference involving the project coordinator and all partners, as well as a public awareness campaign. The campaign will benefit from the expertise and experience of the partner organizations FRAMBU (Norway) and CESI, aiming to raise public awareness and foster a more inclusive society that enables women empowered through the project to participate equally. FRAMBU (Norway) and CESI, s ciljem podizanja javne svijesti i stvaranja inkluzivnijeg društva koje će ženama osnaženima kroz projekt omogućiti ravnopravno sudjelovanje.

Project duration: 15 months (September 1, 2022 – November 30, 2023)

Project value: 86.044,53 EUR

Contact person: Suzana Sakić, Project Manager projekti.hsrb@gmail.com

Web page: https://rijetke-bolesti.com/

Project Partners:

• CESI – Centar za edukaciju i istraživanje http://www.cesi.hr/
• Inclusive House Zvono https://udrugazvono.hr/
• NORBCG – National Organization for Rare Diseases of Montenegro (NORBCG) https://rijetkebolesti.com/
• FRAMBU (Norway) https://frambu.no/