Thank you, Honorable Chair and delegates,

We commend the Arab Republic of Egypt, Spain, and the cosponsoring Member States for their leadership in advancing the Draft Resolution on Rare Diseases under Item 6 on Universal Health Coverage. This resolution represents a significant milestone in ensuring that no one is left behind in UHC, including the over 300 million persons living with a rare disease worldwide.

Rare diseases embody the essence of UHC’s promise: equitable access to care for the most vulnerable, regardless of rarity or complexity. Yet, despite the growing recognition of their importance, millions of families continue to face barriers to timely diagnosis, treatment, and care—hindering their ability to lead dignified and fulfilling lives.

The WHO estimates that there are more than 7,000 rare diseases defined, and this number is steadily increasing. More than 80% of rare diseases are of genetic origin, 70% start in childhood and about 95% lack treatments. The average time for an accurate diagnosis is 4 to 8 years and about 30% of the affected children die before 5 years of age.

The call for WHO to develop a Global Action Plan on Rare Diseases is essential to addressing these gaps. A comprehensive and coordinated Global Action Plan would:
1. Provide Member States with a strategic framework to integrate rare diseases into their national health priorities.
2. Promote equity by fostering collaborations to address cross-border challenges and support sustainable innovation in diagnostics and therapies.
3. Strengthen health systems by driving progress in data collection, research, and capacity building to ensure better health outcomes.

We urge WHO to dedicate the necessary resources, both financial and technical, to develop this Global Action Plan in collaboration with Member States, civil society, and the rare disease community. Without sufficient investment, the resolution’s potential to drive transformative change risks being under-realized.

Addressing rare diseases is not only a matter of health but of equity and human rights. By prioritizing this resolution, Member States will reaffirm their commitment to achieving UHC for all, especially for those too often forgotten.

We stand ready to partner with WHO and Member States in the development and implementation of the Global Action Plan on Rare Diseases. Together, we can build a future where no one living with a rare disease is left behind.

Thank you.