Rare diseases affect millions of people globally and are often complex, involving multiple organ groups and resulting in disabilities and premature death. Many people living with a rare disease frequently experience diagnostic delays, fragmented care, limited access to effective interventions, financial hardship, stigma and social exclusion.
World Health Assembly resolution WHA78.11 (2025) Rare diseases: a global health priority for equity and inclusion requests the Director-General to develop, in consultation with Member States and relevant stakeholders, a comprehensive 10-year global action plan on rare diseases with strategic objectives, global targets and an accountability and monitoring framework for consideration by the Eighty-first World Health Assembly in 2028.
Consultative process
The Secretariat will follow the below consultative process to facilitate the preparation of the draft action plan:
- Information on the process to develop the global action plan on rare diseases will be provided to Member States.
- The Secretariat will publish online a discussion paper on the global action plan on rare diseases in the last quarter of 2026. Member States, United Nations (UN) agencies and relevant non-State actors, including organizations representing people with lived experience, will be invited to provide their inputs on the discussion paper through a web-based platform.
- Based on feedback on the content of the discussion paper, the first draft of the Global action plan on rare diseases will be developed in early 2027. Web-based and virtual informal consultations will then be carried out to seek comments from Member States, UN agencies and relevant non-State actors including people living with rare diseases and their carers and families. The consolidated comments received on the first draft will subsequently be published online.
- The outcomes of the informal consultations on the first draft will serve as inputs for the WHO Secretariat to prepare a revised draft which will be submitted for review to the WHO Executive Board in 2028 (162nd session) for consideration at the Eighty-first World Health Assembly in May 2028.
