Draft WHA Resolution on ‘Rare diseases: a global health priority for equity and inclusion’ is now approved 

Draft WHA Resolution on ‘Rare diseases: a global health priority for equity and inclusion’ is now approved 

The 78th World Health Assembly (WHA78) will conclude tomorrow and, once again, the International Federation for Spina Bifida and Hydrocephalus has been actively engaged in it.

In recent years, IF has established itself as a key player in global health advocacy, achieving significant milestones. In 2023, for instance, IF played a pivotal role in the adoption of two landmark resolutions at the WHA: the WHA76.19 ‘Accelerating efforts for preventing micronutrient deficiencies and their consequences, including spina bifida and other neural tube defects, through safe and effective food fortification’, and the WHA76.6 ‘Strengthening rehabilitation in health systems’.

These achievements are the result of years of committed advocacy by IF, in collaboration with its members, partners in public-private-civic domains, policy-makers, and other stakeholders, driven by a human rights-based approach and the active involvement of persons with disabilities, in line with the principle “Nothing About Us Without Us”.

In 2025, IF continued its mission during the WHA78 by contributing meaningfully to global discussions and co-hosting a high-level side event: ‘Accelerating Action on Micronutrient Deficiencies and their Consequences, including Spina Bifida’, aimed at maintaining momentum on neural tube defect prevention through micronutrient food fortification. 

Read more about our event here.

IF was also actively involved in different dialogues and advocacy efforts on topics such as disability rights, birth defects, nutrition and in particular food fortification, financial mechanisms, mental health, as well as the newly proposed WHA resolution on rare diseases ‘Rare diseases: a global health priority for equity and inclusion’, for which IF was as a member of the global consortium that contributed to shaping and promoting this initiative. For these reasons, once again, we celebrate the adoption of a new important WHA Resolution, which highlights the growing recognition of rare diseases as a global health and equity issue.

This initiative was led by Rare Diseases International (RDI), and formally proposed by the Arab Republic of Egypt and Spain, with the resolution co-sponsored by a diverse group of countries: Bahrain, Brazil, Chile, China, Colombia, Ecuador, El Salvador, France, Greece, Guatemala, India, Iraq, Jordan, Kuwait, Luxembourg, Malaysia, Pakistan, Palestine, Panama, the Philippines, Qatar, Romania, Russia, Slovakia, Somalia, Thailand, and Vanuatu. The process was further strengthened by the support of over 275 members of the coalition in support of the resolution, of which IF is a member. The adoption of this resolution is the result of years of sustained and collective advocacy to advance equity, visibility, and inclusion for people living with rare diseases within global health agendas.

To learn more about the coalition and its role in this achievement, you can read our previous article: The Coalition in Support of the WHA Rare Diseases Resolution. 

The resolution calls on Member States, among other actions:

• To support the WHO in the development of a comprehensive global action plan on rare diseases;
• To strengthen health systems, particularly primary healthcare, to ensure the provision of high-quality and accessible services, especially for children living with a rare disease;
• To reinforce the commitment towards achieving universal health coverage by 2030, by reducing catastrophic out-of-pocket health expenditure and ensuring access to essential, affordable medicines, diagnostics, and health technologies;
• To promote the involvement of patient organisations and organisations of persons with disabilities in decision-making processes.

And the Director-General:

• To develop a comprehensive 10-year Global Action Plan on rare diseases, in consultation with Member States, patient organisations, academics, and experts, to be submitted to the World Health Assembly in 2028;
• To initiate a dedicated workstream focused on universal health coverage for persons living with rare diseases;
• To ensure that the Global Action Plan includes: a framework for equitable access to evidence-based diagnosis and treatments; strategies to improve data collection, research, and surveillance; guidelines for the establishment of national and regional registries; global targets; and mechanisms for monitoring progress.

Building on our previous successes in rehabilitation and prevention through food fortification, IF is pleased to see the adoption of this important resolution. As a global community, we can look forward to the forthcoming actions by Member States to translate its commitments into meaningful change.

IF continues to actively support Member States throughout this process. As well as to you, our member associations, who will be able to use the resolution as a valuable tool to monitor progress and engage with their respective governments in advocating for improved policies and services.

• Read the AI. 6 Draft Resolution ‘Rare diseases: a global health priority for equity and inclusion’ here and here
• Read the Coalition full statement here
• For more information, go to https://www.rarediseasesinternational.org/wha-resolution/