158th session of the WHO Executive Board (EB158): Co-creating the Global Action Plan for rare diseases
On 3 February 2026, IFPMA delivered a statement on Agenda item 9: Co-creating the Global Action Plan for rare diseases at the 158th session of the WHO Executive Board.
IFPMA commends Member States and the WHO for implementing the 2025 WHA Resolution on Rare Diseases and strongly supports the prompt initiation of a Global Action Plan to help countries strengthen national rare diseases strategies including meeting their UHC goals. The Plan is a critical political and operational tool:
- to support countries in developing and strengthening their national rare diseases strategies
- to give global coherence and visibility to rare diseases action.
Rare disease communities face persistent delays in diagnosis, fragmented care, and inequality of access to specialized services and medicines. Addressing these challenges requires strong collaboration across sectors, and our industry stands ready to contribute constructively to the co-creation process that WHO will initiate.
The innovative pharmaceutical industry is committed to bringing relevant expertise to the work of dedicated global expert networks, particularly with a focus on five areas:
- Increasing capacity for dedicated R&D networks and partnerships that would expand scientific understanding and drive innovation where investments and developments have been limited due to rarity of patients.
- Strengthening common data ecosystems, including registries, historical cohorts, pathogenesis studies, real-world evidence, and cross-border data sharing that support better and faster decision-making.
- Improving diagnosis capabilities, including capacity building for use of genomic and AI-enabled tools. We also encourage the development of global diagnostic guidance to help reduce diagnosis inequities.
- Advancing dedicated regulatory pathways, including reliance, convergence, and expedited reviews, supporting timely approval to safe and effective therapies.
- Promoting sustainable access models, including collaboration on value-based pricing, reimbursement, and innovative funding mechanisms, tailored to different regions and health system capacities.
We look forward to supporting the creation and implementation of the GAP now and in the years ahead.
Thank you.
About IFPMA
IFPMA represents the innovative pharmaceutical industry at the international level, engaging in official relations with the United Nations and multilateral organizations. Our vision is to ensure that scientific progress translates into the next generation of medicines and vaccines that deliver a healthier future for people everywhere.
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To achieve this, we act as a trusted partner, bringing our members' expertise to champion pharmaceutical innovation, drive policy that supports the research, development, and delivery of health technologies, and create sustainable solutions that advance global health.
