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Description
The project is expected to bring about a positive change of the environment for people with rare diseases by means of the following: 1. legislative changes introduced, which take into account the needs of patients with rare diseases and provide infrastructure for taking timely care of them; 2. health specialists and health institutions encouraged to take part in the European Reference Networks (ERN) for rare diseases by means of joint work; 3. practical support provided to patients with rare eye conditions by developing a Map of Patients with Rare Eye Conditions where the steps are described to diagnosing, consulting and supporting the patient; 4. setting up a group of patient advocates for active cooperation with medical specialists and the authorities to introduce adequate patient-centred policies. Partnership is important to achieve the project goals given its complex nature and the need to ensure that different groups are engaged in its implementation. The Norwegian Retinitis Pigmentosa Association will contribute with its long-standing experience for patient advocacy, the Center for Protection of Rights in Healthcare with its capacity to prepare legislative amendments and engage the health authorities and the Foundation for Local Government Reform with its knowledge of civic participation in reforming policies.
Summary of project results
The problem addressed by the project is the lack of adequate legislation that meets the needs of the 450,000 people living with rare diseases in Bulgaria. These individuals have various types of disabilities, including those with rare eye diseases – a leading cause of blindness in children and young people.
The project aims to improve the environment and care for individuals affected by rare diseases through patient advocacy for regulatory changes tailored to their specific needs. It also involves initiatives to inform and mobilize public support through debates on empowering people with rare diseases to feel like fully participating citizens in a mature democratic society. The project promoter engaged with different stakeholders, including patients'' organisations, healthcare authorities and institutions and experts.
The positive change in the environment for people with rare diseases was realized through:
- Legislative changes that address the needs of patients with rare diseases and provide infrastructure for their timely treatment.
- Encouraging medical specialists and healthcare institutions to participate in European Reference Networks for rare diseases through collaboration.
- Practical support for patients with rare eye diseases, including the development of a "Rare Eye Diseases Patient Map" describing the patient''s journey to diagnosis, consultations, and received support.
- Formation of a group of patient advocates for active collaboration with medical specialists and authorities to implement appropriate patient-oriented policies.
Summary of bilateral results
The Norwegian partner, RP-foreningen I Norge, contributed to sharing and potentially integrating nearly 30 years of good practices developed in Norway into the Bulgarian context to support the community of patients with rare diseases, along with engaged medical specialists and researchers. In addition to collaborating with the Association of People with Visual Impairments in Iceland (BIAVI) in the previous project under the EEA Grants "Vision for Sight," the network of patient organizations and medical researchers in Bulgaria and Iceland expanded to include those from Norway. The Center for Protection of Rights in Healthcare (CPRH) demonstrated its practical capacity for preparing legislative changes and engaging health authorities, while FRMS (Foundation for Regional Development and Decentralization) shared its experience in understanding and utilizing mechanisms of civic participation in policy reforms.