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Description
The aim of the project is to increase society’s understanding that health is an important aspect of human rights, to ensure people with rare diseases with an equal accessibility to healthcare, to reduce the stigma on the target group, to increase general public and healthcare providers’ awareness of patient rights and needs of patients with rare diseases.
The basic rights of people with rare diseases refer to the social, economic, educational, health, and welfare areas. The representatives of the target group and their families experience discrimination in all these areas. In healthcare, it means that people with rare diseases have limited possibilities to receive necessary healthcare services. In the health industry, there are discrimination risks (health, disease severity, age, disability, social and economic state) that affect both patients and healthcare providers on everyday basis. The project promotes respect for human rights and inclusive, equal attitude towards a particularly vulnerable group of people (including people with disability, with expected disability and people who have not received the disabled status due to discriminating attitude).
The activities of the project: implementation of 2 informative campaigns in 2023 and 2024 about human rights and discrimination risks regarding health needs, emphasizing rare diseases; analytic research development and publishing; patient advocacy; experts’ discussion on human rights in Latvia in the context of rare diseases; lectures for general public and healthcare providers, educational material about patient rights.
As a result, during the informative campaigns, we will reach the audience of 100.000 people; we will will train 500 people and healthcare providers; we will ensure our target groups with a printed educational material (a digital copy available in Alliance’s website); the analytic research will be a useful long-term tool in patient advocacy to ensure respecting the rights of people with rare diseases.
Summary of project results
(1) lack of knowledge and understanding of health as an essential part of human rights, which the state must ensure and for which each individual must also take responsibility;
(2) stigma of the rare disease patient community and inability to represent their rights, fear of making their experiences public (both negative and positive), reluctance to stand up for their rights in state institutions, because there is a belief that nothing can be achieved;
(3) lack of knowledge among medical professionals about patients'' rights and their application in practice, low understanding of the specifics of rare diseases and the needs that children and adults with rare diseases face on a daily basis;
(4) lack of evidence-based analytical research on the observance of human rights in the field of rare diseases in Latvia;
(5) regular and systematic representation of the interests of the rare disease community is a new challenge every year due to limited resources and the rapid changes in public health threats in recent years.
1. Rare Disease Day Campaigns (2023 and 2024)
Educational campaigns aimed at raising public awareness about rare diseases, promoting understanding, and fostering the inclusion of individuals with rare diseases in society.
2. Analytical Study on Human Rights for Rare Disease Patients in Latvia
A comprehensive report was developed by Alliance project experts and patient rights lawyers to advocate for the interests of people with rare diseases and to define future actions in collaboration with stakeholders such as the Ministry of Health, Ministry of Welfare, Ministry of Education, NGOs, and networks. The study assessed:
- Public attitudes and tolerance towards people with rare diseases.
- Latvia''s legal framework compared to international regulations.
- Compliance with the UN Resolution on Support for People with Rare Diseases and their Families.
- Individual cases illustrating human rights observance.
- Implementation progress of the Rare Disease Plan 2023-2025.
Recommendations were provided to improve human rights, promote inclusion, and achieve equality for rare disease patients and their families.
3. Educational Sessions for Residents and Healthcare Professionals
Tailored training sessions for the general public and medical professionals were conducted, using practical examples to equip participants with knowledge relevant to their daily needs.
4. Advocacy Activities
Based on findings from the analytical study and daily consultations, advocacy efforts included participation in working groups, meetings, and discussions with state institutions. The activities focused on key themes identified in the study and aimed to influence policy at a national level by providing evaluations, opinions, and recommendations.
Advocacy efforts addressed health and social sector developments, evaluated regulatory acts, and contributed suggestions for improvements.
The project''s activities aimed to increase the number of human rights supporters in Latvia and reduce the proportion of people unaware of where to seek help in cases of discrimination. The primary target group was individuals with rare diseases and their families, who often face discrimination and violations of basic social, economic, and health rights.
Summary:
- Resource Allocation: The project engaged representatives from the target group with firsthand knowledge of rare diseases. These included employees who were individuals with rare diseases or parents of children with rare diseases, ensuring flexibility to balance caregiving and work responsibilities.
- Planned Activities Implemented: All planned initiatives provided rare disease patients and their families with the tools necessary for effective advocacy.
- Training Achievements: A total of 792 Latvian residents received training on patient rights, equipping them with knowledge on health as a human right, mechanisms for defending their rights in healthcare, where to seek support, and how to address health-related issues with institutions effectively.
In summary, the project promoted human rights awareness and advocacy by providing support to people with rare diseases and their families, as well as educating the public about patient rights and protection mechanisms.