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Description
The ECOU project contributes to the achievement of the general objectives of the EEA Financial Mechanism by strengthening relations between Romania and the donor states, namely Norway, by continuing the exchange of best practices in the field of rare diseases and the development of medical institutions and services for patients with genetic and rare diseases from the two countries, thus contributing to the reduction of economic and social disparities in the European Economic Area. The ECOU project addresses a disadvantaged community, due to disabilities caused by rare diseases and isolation, regardless of ethnicity. We aim to increase prevention and reduce health inequalities for patients with rare diseases, using best practice examples from the Frambu Center in Norway.Prevention services are mentioned as a priority in the National Health Strategy 2014-2020, in the National Plan for Rare Diseases and it is a condition in the accreditation of Expertise Centers for rare diseases (WHO 540/2016).
Summary of project results
There are more than one million patients with rare diseases living in Romania, many of them diagnosed but isolated and without reason for hope due to delayed or wrong diagnosis, lack of specific treatment, lack of specific treatment, economic and social burden on the family, lack of specialized services, low participation in school education due to insufficient support services for children with physical, intellectual disabilities, behavioral problems and special educational needs, school drop-out and early school leaving and lack of access to primary health care.
Some of those diagnosed have behavioral problems and are not integrated into the community, others need special nutrition and there is no expertise in this area, developing obesity or malnutrition and severe neurological problems.
The project proposed an integrated approach, working with family doctors, community health nurses and health mediators to better care and refer patients to the services they need and to the Centers of Expertise.
Over a third of rural localities and ten percent of small towns have no public social care services, and the health and social services infrastructure is poor and there is a lack of communication between specialists. With almost half of the population living in rural areas, we can conclude that a substantial proportion of the population does not have access to such services.
Studies carried out by project partner at the Frambu Center in Norway and the experience gained in the more than 9 years that the NoRo Center (APWR) has been operating have shown that for many people with disabilities caused by rare diseases, the problems associated with disability, eating behavior and the need for a specific lifestyle in certain rare diseases can have a major impact on the development and quality of life of a large number of patients. However, national expertise in this field is almost non-existent. Therefore, the aim of the project was to train relevant specialists in patient care, family physicians and community health nurses, and a better understanding of case management in these complex diseases.
Informing and forming a support network in the community is an innovative approach to change the system of care that will partially solve the problem of lack of medico-social services in rural areas. Frambu Centre have solved the problem of long distances between localities and lack of local expertise also by forming community support networks, moving specialists from the Frambu Center to the community, and now with online training. Based on this reality, most of the therapeutic education activities will be carried out in partnership with the NoRo Center so that training participants will have the opportunity to learn about rare diseases and the management of these diagnoses.
In the case of the ECOU project, "prevention" means preventing the worsening of rare diseases and limiting their social and medical impact on patients and families, improving medical, educational and social services in terms of accessibility, quality, efficiency and patient satisfaction. Collaboration and sharing the experience of our beneficiaries is one of the NoRo Center''s "innovative approaches" to create the preconditions for an informed and educated community to accept and support p*patients with rare diseases.
Correct diagnosis and reduction of waiting time for rare disease patients in isolated communities and their inclusion in services as needed is a national priority, as failure to address this issue could lead to the deterioration of the health status of almost 6% of the country''s population and increase the social impact of these diseases on families and the community at large.
By informing and training the various stakeholders in the 10 counties in the field of rare diseases and forming support networks in the community the projet will be able to connect patients, people suspected of having certain rare diseases and their families with the experts and services they need.
Activity 1.1 - Identification of patient associations and mapping of care services for patients with rare diseases in each county
Identification of patient associations and mapping of care services for rare disease patients in each county (members or non-members of the National Alliance for Rare Diseases). Travel to each county to better communicate and identify those services that really work.
Result 1.1. A map of care services for rare disease patients created.
Activity 1.2. Identify the needs of patients with rare diseases for medical, social and educational services by applying a questionnaire to at least 500 patients/family members.
The results of the survey applied in the first phase were the starting point for discussions in each county at the intersectoral meetings,
The needs analysis of rare disease patients is continuously updated with the needs identified at the intersectoral meetings and in interviews with representatives of the authorities, and the final results will be published in a needs report. The needs report was finalized and submitted in the previous reporting period.
It was presented at the final ECOU conference and will be presented at the satellite session of the ECRD European Conference on Rare Diseases on May 13 to be included in the final ECRD 2024 report that Eurordis is sending to the European Commission. This report forms a basis for ANBRaRo''s future advocacy activities.
Result 1.2. A questionnaire on the needs of patients with rare diseases conducted, implemented and published in a needs + resources report in each county. (questionnaire completed by at least 500 patients/family members)
Activity. 1.3. Initiate an intersectoral collaboration platform for rare disease patients in remote areas in at least 10 counties: DGASPC, DAS, SPAS, CJRAE, members of the expert appraisal and disability classification committees, AJOFM- County Resource and Educational Assistance Centers, care service providers, patient associations, DSP, etc. The meetings of the platform members will present the needs identified for patients with rare diseases, discuss the challenges faced by the representatives of the authorities/ medico-social services and propose solutions.
Result 1.3. 100 persons involved in 10 online meetings, informed about the needs and challenges in the counties and solutions proposed. An inter-county action and collaboration plan to support rare disease patients based on identified needs.
Activity 1.4 - Initiating a pilot program of interdisciplinary monitoring and evaluation at home of 50 patients (children and adults) with rare diseases living in isolated areas of the county or integrated in the social protection system. Sălaj. As there are a lot of children and adults with severe disabilities in the protection system, we are convinced that many of them are affected by rare diseases but are not yet correctly diagnosed. That is why we propose to introduce family-type homes, sheltered housing or other centers for people with disabilities into the home monitoring program and to connect them with support persons in the community (local authorities, nurses, community nurses, social workers, social workers, referrers, teachers, etc. An interdisciplinary team will assess, in agreement with the DGASPC, the health status of children with disabilities in family-type homes and sheltered housing in the county of Sălaj and will propose to the DGASPC the referral to medical and genetic diagnostic services, where appropriate. Through this program we will identify complex cases that need further assessment and investigation and will be coordinated to the appropriate diagnostic and care services.
Result 1.4 A pilot home-based follow-up program implemented, replicable in other areas/counties.
Activity 1.5. Organizing therapeutic education groups for 350 people affected by rare diseases online and/or face-to-face (each patient will benefit from a 5-day program per group, 3 hours/day, therapy, counseling, therapeutic education, consultations, depending on the needs of the group) and therapy sessions for 20 children on the waiting list of the NoRo Center. Implementation of a pilot home monitoring program for 50 people with rare diseases from isolated areas of the county of Sălaj, from the county''s social protection system.
Result 1.5. 420 direct service beneficiaries, of which:
350 people beneficiaries of online and face-to-face therapeutic education groups and 20 children from the NoRo Center''s waiting list initiated in the Center''s therapies. 50 patients will benefit from the home assessment and monitoring program.
Activity 2.1. Updating the information from the list of rare diseases and their publication on the website http://edubolirare.ro/index-boli-rare
Result 2.1. List of rare diseases on the website updated with 50 more rare diseases
Activity 2.2. Initiation of a communication plan for ANBRaRo and reorganization of the program Radio NoRo - patients'' voice.
Organization of 3 workshops with alliance members
Result 2.2.An updated program at Radio NoRo, equipment purchased, hiring a person responsible for communication. A communication plan realized for ANBRaRo.
Activity 2.3. Continued promotion of the project and organization of a sustained national awareness campaign with community involvement. An initial press conference with a minimum of 20 online participants to launch the project. A final conference to present the project results will be organized with a minimum of 100 participants (F2F).
Result 2.3 A campaign realized and a report on the impact of the OTS project realized. (Minimum 10.000.000 OTS)
Activity 3.1 Involvement of Norwegian partners in the online launch conference and final F2F conference
Result 3.1 Norwegian partners informed about the project and its progress.
Activity 3.2 Organization of an online workshop for exchange of best practices with specialists from the intersectoral collaboration platform from the 10 selected counties and partners from the Frambu Centre on the organization of community care in Norway.
Result 3.2 Two presentations by Norwegian partners at the workshop and exchange of good practices realized.
Activity 3.3 Support from the Norwegian partners in updating the website with at least 50 more rare diseases and organizing the new Radio NoRo program.
Result 3.3 Website updated with at least 50 more rare diseases and Radio NoRo program updated.
Activity 3.4 Communication and exchange of experience in the realization of online groups of patients with rare diseases and sharing of experiences on the organization of patient groups at the Frambu Centre.
Result 3.4 Knowledge gained about how Norwegians organize online patient groups.
The project contributed to the achievement of the overall objectives of the EEA Financial Mechanism by strengthening the relations between Romania and Norway, by continuing the exchange of best practices in the field of rare diseases and the development of medical institutions and services for patients with rare and genetic diseases in the two countries, thus contributing to the reduction of economic and social disparities in the European Economic Area.
Main outcomes:
10 selected counties: Sălaj, Cluj, Bihor, Timiș, Bistrița Năsăud, București, Dolj, Iași, Neamț and Gorj, Database of patient associations created and map of accessible services.
1 questionnaire implemented, 790 replies received, report promoted.
An intersectional platform realized in the 5 counties.
A pilot home monitoring program initiated and implemented for 51 patients
370 patients in groups, online and F2F.
List of rare diseases updated with 50 rare diseases
1 Communication plan and 1 reorganized radio program
1 Press monitoring report
1 online workshop to exchange best practices with specialists from the cross-sectoral collaboration platform
10 people participating in the exchange experience