{"id":2983,"date":"2022-09-22T12:30:35","date_gmt":"2022-09-22T10:30:35","guid":{"rendered":"https:\/\/rijetke-bolesti.com\/?p=2983"},"modified":"2025-03-11T12:16:46","modified_gmt":"2025-03-11T10:16:46","slug":"2983-2","status":"publish","type":"post","link":"https:\/\/rijetke-bolesti.com\/en\/2983-2\/","title":{"rendered":"Hrvatski savez za rijetke bolesti, sa\u017eetak projekta \u201e\u017dENSKI STAV ZA SUSTAV! Sveobuhvatna podr\u0161ka i osna\u017eivanje \u017eena s izazovima rijetkih bolesti\u201c"},"content":{"rendered":"
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Project Description:<\/strong><\/p>\n

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.<\/p>\n

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!<\/strong> Sveobuhvatna podr\u0161ka i osna\u017eivanje \u017eena s izazovima rijetkih bolesti”, koji financira Fond za aktivno gra\u0111anstvo.<\/strong><\/p>\n

The project introduces the Case management <\/em>model –  stabilna kontakt to\u010dka, sveobuhvatan, holisti\u010dki, kontinuirani, na osobu orijentirani 1 na 1 pristup, koji obuhva\u0107a multidisciplinarni tim stru\u010dnjaka i volontera, koji pru\u017eaju pravnu, psiholo\u0161ku, medicinsku podr\u0161ku i informiranje, edukaciju i umre\u017eavanje. Ovaj model primijenit \u0107e i partnerska organizacija Inkluzivna ku\u0107a \u201eZvono\u201c, \u010dime se usluge i podr\u0161ka za \u017eene koje boluju od rijetkih bolesti ili skrbe o djeci s te\u0161ko\u0107ama decentraliziraju i postaju dostupne i u slabije razvijenim regijama.<\/p>\n

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 \u201cZvono\u201d 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. CESI<\/strong>In addition to the Croatian Alliance for Rare Diseases, the research will be conducted by the project partners Inclusive House \u201cZvono\u201d and the National Organization for Rare Diseases of Montenegro (NORBCG) Inclusive House Zvono<\/strong> i Nacionalni savez rijetkih bolesti Crne Gore<\/strong>providing insight into the issue across different regional contexts and creating a foundation for advocacy in public policy.\n\nAdvocacy 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<\/strong> (Norway) and CESI<\/strong>, s ciljem podizanja javne svijesti i stvaranja inkluzivnijeg dru\u0161tva koje \u0107e \u017eenama osna\u017eenima kroz projekt omogu\u0107iti ravnopravno sudjelovanje.<\/p>\n<\/p>\n

Project duration:<\/strong> 15 months (September 1, 2022 \u2013 November 30, 2023)<\/p>\n

Project value:<\/strong> 86.044,30 EUR<\/p>\n

Contact person:<\/strong> Suzana Saki\u0107, Project Manager projekti.hsrb@gmail.com<\/a><\/p>\n

Web page:<\/strong> https:\/\/rijetke-bolesti.com\/<\/a><\/p>\n

Project Partners:<\/strong><\/p>\n