The World Patients Alliance (WPA) welcomes the World Health Organization’s announcement outlining the process and next steps for developing a Global Action Plan on Rare Diseases, an important step towards improving equity, inclusion, diagnosis, treatment and care for people living with rare diseases worldwide.
The plan follows the adoption of World Health Assembly Resolution WHA78.11, “Rare diseases: a global health priority for equity and inclusion,” in May 2025. WHO has been requested to develop the Global Action Plan in consultation with Member States and relevant stakeholders and submit it for consideration by the World Health Assembly in 2028.
According to WHO, the plan is expected to include strategic objectives, global targets, and mechanisms for monitoring progress. It aims to address many of the challenges faced by people living with rare diseases, including delayed diagnosis, fragmented care, limited access to treatment, financial hardship, stigma and social exclusion.
Patients and families must be central to the process
WPA particularly welcomes WHO’s commitment to involve people living with rare diseases, carers, families and their representative organizations in the development of the plan.
WHO plans to publish a discussion paper during the last quarter of 2026, followed by consultations with Member States, UN agencies, non-State actors and organizations representing people with lived experience. A first draft of the Global Action Plan is expected in 2027, with further consultations before the final proposal is considered in 2028.
For WPA, meaningful patient engagement will be essential to ensure that the final plan reflects the real needs and experiences of people living with rare diseases. Patients and families should have opportunities to contribute not only to its development, but also to its implementation, monitoring and evaluation.
Key priorities should include timely and accurate diagnosis, coordinated and person-centred care, equitable access to affordable treatments and health technologies, psychosocial support, research and innovation, and the integration of rare diseases into universal health coverage.
WPA encourages patient organizations and other stakeholders to actively participate in the forthcoming WHO consultations and help ensure that the voices of people living with rare diseases are reflected throughout the process.
The development of the Global Action Plan provides an important opportunity to translate global recognition of rare diseases into meaningful action that improves the lives of patients and families worldwide.