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Description
We focus on supporting patients with multiple sclerosis, whose position in society and the health care system is not adequately taken into account. We are a patient organization - we coordinate ROSKA branch associations and provide methodological support in all regions of the Czech Republic. For the Union''s long-term and sustainable action we need to maintain and strengthen the key positions that are responsible for running the organization, liaising with associations and working directly with clients. We want to maintain the high quality and intensity of education of branch association chairmen, and to maintain services for our clients: (i) information service (online social counseling), (ii) training of rehabilitation trainers to support clients'' physical activities. We will focus on raising awareness about MS, clarifying myths and promoting prenvece.
We will work with a Norwegian partner - The Royal Norwegian Society for Development (RNSD), which will involve the Norwegian Multiple Sclerosis Association (Bergen). We will focus on sharing good practice in healthy eating for the chronically ill, strengthening the membership base and strategic fundraising. A significant added value of KSPR is its extensive experience with the strategic management of the organization, financial self-sufficiency and community building.
We will fulfill the above goals through six professional activities: (i) Personnel and strategic development of the ROSKA Union (part-time), (ii) ROSKA Union Academy of Education (30 trained), (iii) Support for the development of ROSKA Union activities and services (online doctor''s office ), (iv) ROSKA Union Rehabilitation Academy (20 trained), (v) RStart - ROSKA Union awareness campaign, (vi) Partnership cooperation (transfer of know-how), as well as management and publicity activities. We will focus our activities on target groups of people with disabilities (including our members) and the public.
Summary of project results
The project focused on developing the capacity and support of the patient organization - UNIE Roska, and in a broader context also on the support of patients with multiple sclerosis (MS) in the Czech Republic, including the launch of an information campaign to demystify this disease in the Czech public space. By implementing the project, we responded to the need to strengthen the personnel and development capacities of our organization, incl. systematic management of 26 branch associations. Cooperation with a Norwegian partner enabled us to take over good practice and modern knowledge related to the feeding of patients with MS, management of the patient organization and activities ensuring long-term financial stability. The overall implementation of the project took place without serious problems - beyond the scope of minor communication misunderstandings and acceptable shifts in the dates of implementation of selected partial outputs, we did not address significant risks threatening the fulfillment of the original goals of the project.
As part of the project, we implemented a total of 7 activities, 2 administrative and 5 expert, namely: 1) Project management: It took place in accordance with the set goals; we completed a monitoring visit of the Grant Provider (2/2024) and prepared a total of 7 reports on implementation. The activity covered the processoriented administrative management of the project. 2) Publicity of the project: The activity was closely linked to the professional and informational tasks of Key Activity No. 5. ; the project was a communication success and recorded a number of media outputs in printed and online form, which brought readers and viewers closer to the issue of MS in a broader context. 3) Personnel and strategic development of UNION ROSKA: The activity enabled us to expand our team by adding a professional fundraiser and a PR manager; both positions contributed to the modernization and professionalization of our ability to build long-term financial sustainability and fulfill a modern communication strategy on social networks and in printed periodicals. 4) UNIE Roska Academy of Education: Thanks to the activity, we had the opportunity to professionally educate more than 40 members of the management of our branch associations and help them improve the quality of the financial and strategic management of their subordinate organizations throughout the Czech Republic. There was enormous interest in education from our members, and we significantly exceeded the original quantitative indicators of participation. 5) Support for the development of activities and services of the ROSKA Union: Thanks to this activity, we significantly increased the quality and interest in the online service of the counseling center and doctors, who answered over 100 professional questions of existing and newly diagnosed patients. 6) RStart - awareness campaign of Unie ROSKA: We implemented an information campaign, which we successfully connected with a number of other ongoing awareness activities. We obtained and used media space, for example, on Czech Television and in a number of other communication channels, thanks to which we became the leading patient organization raising awareness of MS in the Czech Republic. 7) Partnership cooperation: In cooperation with the Norwegian partner Norges Vel, we organized two study trips and organized a professional accompanying program in the Czech Republic and Norway.
The purpose of the project was fulfilled in the entire breadth of defined needs and professional assumptions. On the institutional-developmental level, there was an improvement in the quality of management and organizational activities in the organization of Roska Union, which in the course of implementation led to the strengthening of financial self-sufficiency and the professionalization of fundraising activities. Three job positions were created.We were able to successfully obtain funds from new donors and programs (e.g. Erasmus+) and diversified the portfolio of financial donors. Compared to the situation before the start of the project, we have thus achieved an improvement in the financial stability of our patient organization and the ability to plan and obtain additional resources beyond the scope of public funds. Members of the Union (associations and natural persons) received significant non-financial support - this was manifested primarily in the number and intensity of educational activities, trained persons and the qualitative impact on the organizational management of 26 branch associations. A total of 4 educational activities (weekend seminars) were held. Last but not least, we successfully managed to comprehensively address communication and engagement with target groups—current and future patients with MS—within the Union. We helped dispel long-standing myths; our website has become the main starting point for finding information about RS in the Czech Republic and has recorded a continuously increasing trend in visitors. Two press conferences were held. Through our information campaign, we contributed to greater awareness about MS—evidenced by an increased interest in the Union''s activities, particularly our online counseling service. We published 350 brochures with inspiring stories of MS patients in paper form and 3000 information leaflets were distributedRepresentatives of the target group reached out to us with both expert and general inquiries regarding MS. It can therefore be concluded that the project solidified the Union''s position in the field of counseling—we assisted more than 100 inquirers and improved conditions for newly diagnosed patients to navigate their situation. We have become a more competent and professional patient organization. The experience of the Norwegian partner also helped us achieve this result - knowledge about the issue of special nutrition for patients with MS was a significant added value. The transferred best practices were incorporated into the informational and professional support provided to our members. As part of the partnership, 2 study tours took place and 1,000 bilingual cookbooks for patients with MS were published.
Summary of bilateral results
Our project benefited from the opportunity to cooperate with a large and important organization with historical experience, Norges Vel. Thanks to them, we established cooperation with our partner organization MS I Bergen.Personal meetings were beneficial for us during which we discussed the possibilities of further cooperation within the framework of the sustainability of the project.The outcome of the cooperation is a joint publication Taste Inspiration from the Czech Republic and Norway for MS Patients. Teams from both countries actively participated in its content and creation during partner visits and outside of them within the framework of email and online consultations. The publication was published bilingually in Czech/Norwegian and at the request of the Norwegian partner in online form also in English. Patients from both countries can therefore use it. The publication contains information about the project therefore also contributes to the promotion of the project itself. The cooperation clearly led to an improvement in our knowledge of how the partner organization in Norway supports patients. We can use their knowledge and experience as arguments in the advocacy of Czech MS patients. It also contributed to a better understanding of the state of healthcare, its financing, the functioning of patient organizations and support for patients diagnosed with MS in the Czech Republic and Norway. We hope that it has established the possibility of our further future cooperation.