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Description
Social services tailored according to the needs of people with rare diseases are almost non-existent in Bulgaria. Rare diseases are not included in any national or local strategy to develop social services or long-term care. The project aims at contributing to reduction of the social gap by empowering the vulnerable group of people with rare diseases for civic engagement, initiation of reforms in social policies, introduction of an innovative contemporary social service and strengthening of bilateral relations between the donor states and the beneficiary states. Our project will help activate for civic engagement people with rare diseases, some of them living in less-developed geographic regions and groups (Roma), to formulate recommendations based on their experience about desired reforms and services. The project will contribute to solving the above issue through boosting the capacity of people with rare diseases for civic engagement, preparing training and information materials appropriate for multiplication of training sessions among other vulnerable groups, transferring information about good practices of social services from the donor states, proposals from users to the institutions to improve and reform social services, piloting of an innovative tele-rehabilitation service with an assessment by practitioners and users, an innovative increase of access to services through a weekly Open-door day accessible for external users and identified “lessons learnt”. The direct beneficiaries are people with rare diseases, including Roma, and public institutions responsible in the area of social policy and services. The partner will share experiences and good practices from Norway, where there are long-standing models of services and experience in empowering people with rare diseases. To this end, trainings, exchange of good practices with the Norwegian partner organization and an advocacy campaign for social policy reforms will be carried out.
Summary of project results
The main goal of the project was to contribute to reducing social disparities experienced by people with rare diseases by empowering them to participate in citizens’ activity and initiating reforms to improve access to social support.
The main activities of the project:
• Exchange of experience and identification of good practices for building partnership between Bulgaria and Norway in the field of rare diseases;
• Empowering people with rare diseases through thematic trainings and events to build self-advocacy skills and knowledge of basic civil rights;
• Advocacy campaign before institutions for the right of people with rare diseases to receive social support according to their specific needs.
During the project, trainings, exchange of good practices with the Norwegian partner organization and an advocacy campaign for social policy reforms were carried out. During the activities, a number of written and video materials were created, available for use to stakeholders. Due to the pandemic, all planned trainings and events took place online, and the planned regional meetings were held with reduced frequency and a small number of participants. However, on the whole a large number of participants joined the project and an Advisory Board of active and motivated citizens with rare diseases was set up.
The project introduced good practices and trained more than 120 final beneficiaries, carried out serious communication of the identified problems with key institutions and placed the issue of "rare diseases" in the focus of public attention. The feeling of change among the final beneficiaries is very high, and many of them have made real changes both to improve the quality of their own lives and that of the vulnerable group as a whole. The project will continue with the practical implementation of the identified good practices and the establishment of a National Network for Self-Help for People with Rare Diseases.
The project has its own website - www.empowerare.eu
Summary of bilateral results
During the project, trainings, exchange of good practices with the Norwegian partner organization and an advocacy campaign for social policy reforms were carried out. During the activities, a number of written and video materials were created, available for use to stakeholders. Due to the pandemic, all planned trainings and events took place online, and the planned regional meetings were held with reduced frequency and a small number of participants. However, on the whole a large number of participants joined the project and an Advisory Board of active and motivated citizens with rare diseases was set up.