Latin American Alliance for Rare Diseases (ALIBER) Leads High-Level Advocacy at Ibero-American Congress in Peru - World Patients Alliance

Latin American Alliance for Rare Diseases (ALIBER) Leads High-Level Advocacy at Ibero-American Congress in Peru

The Latin American Alliance for Rare Diseases (ALIBER) successfully hosted the XI Ibero-American Congress and III High-Level Forum on Rare, Orphan, and Less Common Diseases on 7–8 November 2024 at the Congress of the Republic of Peru in Lima.

This high-level event brought together national policymakers, international experts, civil society leaders, and rare disease advocates from across Latin America to drive collaborative solutions and highlight the urgent need for global action on rare diseases.

A key focus of the forum was rallying regional support for the proposed WHA78 Resolution on Rare Diseases, led by Egypt and Spain. The resolution urges WHO Member States to recognize rare diseases as a global health priority and to develop a Global Action Plan ensuring earlier diagnosis, better access to care, and stronger protections against financial hardship.

Among the speakers was Karla Ruiz de Castilla, Board Director of the World Patients Alliance and a widely recognized advocate for rare disease policy in Latin America. Her intervention emphasized the importance of global equity, multisectoral partnerships, and the inclusion of rare disease patients in universal health coverage efforts.

Also representing ALIBER was Juan Carrión Tudela, President of the Alliance, who called for collective regional endorsement of the resolution and shared insights into the systemic challenges patients face, including delayed diagnoses, lack of coordinated care, and fragmented policy recognition.

The event served as a regional milestone, reinforcing Latin America's voice in shaping rare disease advocacy at the global level and aligning directly with the mission of the World Patients Alliance to elevate patient voices in policy and practice worldwide.