Active Citizens Fund – ACF

Projekt: ŽENSKI STAV ZA SUSTAV! Sveobuhvatna podrška i osnaživanje žena s izazovima rijetkih bolesti

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 STAND FOR THE SYSTEM! Comprehensive support and empowerment of women facing the challenges of rare diseases,” funded by the Active Citizens Fund. WOMEN'S STAND FOR THE SYSTEM! “WOMEN’S STAND 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 –  stabilna kontakt točka, sveobuhvatan, holistički, kontinuirani, na osobu orijentirani 1 na 1 pristup, koji obuhvaća multidisciplinarni tim stručnjaka i volontera, koji pružaju pravnu, psihološku, medicinsku podršku i informiranje, edukaciju i umrežavanje. Ovaj model primijenit će i partnerska organizacija Inkluzivna kuća Zvono, čime se usluge i podrška za žene koje boluju od rijetkih bolesti ili skrbe o djeci s teškoćama decentraliziraju i postaju dostupne i u slabije razvijenim regijama.

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/