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Description
People with rare diseases continue to be off the radar of health and social support and they became even more vulnerable during the pandemic because their growing need of professional support has been neglected. EMPOWERare-2021 will help achieve permanent citizen involvement of people with rare diseases, some of whom come from disadvantaged geographical regions and groups, greater empowerment with the help of transferred Norwegian good practices and improved skills for upholding of rights and introducing the necessary reforms to make the issues more visible. To achieve empowerment and the specific goal, a mutual help network will be set up and end beneficiaries will have their capacity developed to participate in state policy setting and counselling. The project will help solve the above issue by training people with rare diseases to boost their capacity for civic involvement, creating referential materials with free access, transfer of good practices of support and empowerment services adapted to the local context, building a national network for mutual help of people with rare diseases, counselling by “patient assistants” on specific cases, building a virtual resource platform for sharing and consulting, strengthening the link between people with rare diseases and young people at a summer camp. In the short term, conditions will be created for “crisis” interventions through counselling, training and virtual mutual help groups. In the long term, partnerships will be created and local authorities and communities will be involved in solving issues and challenges important for people with rare diseases. Partnership with FRAMBU Norwegian resource centre will be key to transfer working practices and information to help the target group overcome their urgent issues. The contribution is two-way and durable partnership is based on common vision for building long-term models for active involvement and empowerment.
Summary of project results
In Bulgaria, over 400,000 people suffer from rare diseases for which access to healthcare is unclear and difficult. For those for whom there is no medical treatment, social support is not provided in any form, despite incurable debilitating illnesses. Social isolation is compulsory, not a free choice for people with rare diseases, they are vulnerable and discriminated against, their basic human rights are violated. Rare diseases are not integrated into the social and health policy and their specific and urgent needs are not met. Untreatable in 95% of cases, rare diseases lead to socio-economic instability, complex disabilities, low survival and reduced quality of life.
The project aimed to mobilize the civil activism of people with rare diseases, by implementing good practices, building a network for mutual assistance, and providing resources for awareness and self-advocacy.
The project was implemented in partnership with the Frambu Rare Diagnoses Resource Center (Norway) and the informal partnership of organizations and informal groups of people with rare diseases, media, and institutions. The main activities of the project were - launching a National Information Telephone Line, conducting a Summer Training Camp, conducting specialized online training for people with rare diseases, building a virtual Resource Platform with accessible information, forming a National Self-Help Network for people with rare diseases. Project activities reached more than 400 people living with rare diseases, translated, and classified more than 1000 pages of key information, provided consultations to more than 130 cases through the helpline and sent more than 10 advocacy letters and opinions on the initiative of people with rare diseases and patient organizations.
The project identified problems that worsen the quality of life of those affected by rare diseases and limit their access to health and social services. Thanks to the empowerment initiative, a rare disease information helpline is operational, operating according to the standards of the EURORDIS network, and more than 400 people living with rare diagnoses have been reached through trainings, a camp, a peer support network, and empowerment activities.
Over 120 people with more than 80 different rare diagnoses have sought help from the National Rare Disease Hotline.
The results of the project in numbers are:
- 400 patients reached through activities
- 121 families covered in Helpline
- 4 conducted online trainings
- 23 lecturers: medical and non-medical specialists
- 82 patients trained
- 493 people connected to a network
- 12 letters requesting changes to national institutions.
Summary of bilateral results
Added value of the project partner: Preparation of resource video materials for subsequent use, mentoring for the implementation of some of the activities and a memorandum of long-term partnership.Through EMPOWERare2021, several good practices were implemented to empower and support people living with rare diagnoses and their families, which proved to be working and effective. The creation of a wide network of interested parties on one hand created an opportunity for joint actions in the direction of advocating for the rights of those affected. On the other hand, the successful collaboration with the partners from the Frambu Resource Center creates prerequisites for future cooperation in the creation of a similar innovative service in Bulgaria as well. The information hotline and the resource platform with open access to a database that will potentially be used by 500,000 people in Bulgaria, and which can be updated and upgraded over time.