WHO Sets Global Path to Transform Rare Disease Care by 2028

The World Health Assembly adopted resolution WHA78.11 in 2025, formally recognising rare diseases as a global health priority linked to equity and inclusion.

Rare diseases affect millions of people worldwide, often involving several organs and causing lifelong disability, declining health or premature death. For many patients and families, the journey begins with years of uncertainty as symptoms are misunderstood, specialists work separately and a clear diagnosis remains out of reach. Even after a condition is identified, effective treatment may be unavailable or unaffordable, leaving families to manage medical costs, disrupted education, lost income, stigma and social isolation.

Rare diseases recognised as a global health priority

The World Health Assembly adopted resolution WHA78.11 in 2025, formally recognising rare diseases as a global health priority linked to equity and inclusion. The resolution asks the WHO Director-General to develop a comprehensive 10-year global action plan featuring strategic objectives, measurable global targets and a framework for monitoring progress and holding institutions accountable.

The plan is expected to provide countries with a shared direction for improving diagnosis, coordinating care, strengthening health systems and addressing the social and financial pressures experienced by people living with rare diseases. It will also place the voices of patients, carers and families at the centre of decisions that directly affect their lives.

Patients and families will help shape the plan

WHO will begin by sharing information about the development process with Member States. A discussion paper is scheduled for publication during the final quarter of 2026, opening a web-based consultation for governments, United Nations agencies and relevant non-State actors.

Organizations representing people with lived experience will be invited to contribute, allowing patients and families to explain where health systems fail them and what meaningful support should look like. Their knowledge can help ensure that the plan reflects everyday realities rather than relying only on clinical or administrative perspectives.

Global action plan moves toward 2028 approval

WHO plans to prepare the first draft in early 2027 using feedback gathered through the initial consultation. Member States, UN agencies, patient organizations, carers, families and other stakeholders will then be able to review the draft through online and virtual informal consultations, with consolidated comments published for transparency.

The Secretariat will use these responses to prepare a revised version for the WHO Executive Board's 162nd session in 2028. The final proposal is expected to reach the Eighty-first World Health Assembly in May 2028, marking a major step toward fairer diagnosis, better coordinated care and stronger inclusion for people whose conditions are rare but whose needs cannot be overlooked.