WHO Report at the II CIS Orphan Forum | Moscow, June 26, 2025
The key event of the first plenary session of the II CIS Orphan Forum was the speech by Ulrike Schwerdtfeger, technical manager for rare diseases at the World Health Organization.
At the Forum for the first time at the regional level, the provisions of resolution WHA78.11, adopted by the World Health Assembly in May 2024, were officially presented.
The resolution was initiated by Egypt and Spain, supported by 39 states, including the Russian Federation, and enshrined rare diseases as a global health priority.
Ulrike Schwerdtfeger presented the main recommendations formulated in the resolution:
- Integration of rare diseases into national health systems, including newborn screening and access to diagnosis and treatment
- Strengthening health systems, especially primary care, with a focus on equal access for children and other vulnerable groups
- Development of psychosocial support and mental health programs
- Training - pre-university education and continuous training of specialists
- Development of digital solutions, national registries and centers of expertise
- Involvement of patient organizations in policy development and decision-making
- Funding research and innovation in rare diseases
Next steps for WHO:
- Mapping existing WHO guidelines and tools applicable to rare diseases, including those on diagnosis, treatment, prevention and monitoring.
- Preparing a technical report that will summarize WHO’s current knowledge and work on rare diseases, including gaps and priorities.
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Developing a 10-year global action plan on rare diseases, to be completed by 2028.
The plan will focus on addressing inequalities, improving access to care, strengthening health systems and promoting innovation.
- Conducting extensive consultations with Member States, civil society, expert organizations and patient associations to formulate the content of the plan.
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Identifying and developing Centers of Excellence with clinical, scientific and educational expertise in rare diseases that can:
- ensure cross-border interaction and knowledge exchange
- participate in peer-to-peer consultations
- support the formation of international professional networks
- Providing technical assistance to countries, including methodological support in developing national strategies, creating registries, regulatory frameworks, and training specialists.
- Creating a separate area of WHO work dedicated to rare diseases within the Health Promotion and Disease Prevention Unit. This direction will become a permanent point of coordination of international actions in this area.
The WHO representative invited the CIS Orphan Consortium to actively participate in the international agenda and jointly develop a global action plan.
In response, the session participants confirmed their readiness to cooperate with WHO and implement the provisions of resolution WHA78.11 at the national and regional levels.
