Towards a Global Action Plan on Rare Diseases: WHO discussion paper now open for consultation
Last week, the World Health Organization (WHO) published a discussion paper for consultation as the first step in the development of the Global Action Plan on Rare Diseases (GAPRD). This discussion paper is an official, provisional document published by the WHO, providing an overview of the proposed scope, guiding principles, and action areas of the GAPRD. It enables the WHO to share its thinking with the rare disease community and collect their feedback through a public consultation, which is accepting submissions until 4 December 2026.
In order to ensure that the global rare disease community responds to the consultation with a strong collective voice, Rare Diseases International (RDI) will be conducting a short online survey with targeted guiding questions, beginning on 10 November. This survey will help people living with a rare disease (PLWRD) and their families reflect on the relevance, feasibility and implementation of the proposed measures, identify gaps, and suggest improvements. The questions will also guide discussions led by the RDI Regional Task Forces over the next month.
Ultimately, RDI will consolidate the community’s feedback to prepare a set of recommendations for the WHO, which will be shared in a webinar to gather final input before being submitted to the consultation.
On 10 November, RDI will also be hosting two public information sessions to provide an overview of the discussion paper and the consultation process, at 10:00 CET and 16:00 CET (with Spanish translation). We encourage all those who are interested in providing feedback on the discussion paper to register for one of the sessions.
Image via Rare Diseases International
The GAPRD is being developed in the framework of the 2025 World Health Assembly (WHA) Resolution on Rare Diseases, which requires the WHO to develop, in consultation with Member States and relevant stakeholders, a comprehensive 10-year plan with strategic objectives, global targets and an accountability and monitoring framework for consideration by the WHA in 2028. The results of the consultation based on the recently published discussion paper will inform the development of a first draft of the GAPRD in early 2027. A consultation based on this draft will then be organised to gather input from Member States and interested stakeholders, which will in turn help refine the draft prior to review by the WHO Executive Board in 2028 (162nd session) for consideration at the Eighty-first World Health Assembly in May 2028.
The GAPRD’s overall objective is to improve care and quality of life for PLWRD around the world, ensuring that no one is left behind in the pursuit of universal healthcare.