Accelerate & harmonize
rare disease policy

Vision

Every country in the world has patient-centered, evidence-informed rare disease policies & plans that effectively protect & improve the well-being of people living with a rare disease, their families & caregivers

Mission

Accelerate & harmonize the design, adoption & implementation of national rare disease policies & plans in Asia Pacific & Latin America by catalyzing political will & momentum and facilitating exchange of best practices between & within countries

Strategy

Rare Toolbox

Create tools to help governments & partners make political & policy decisions for rare diseases: case studies, white papers, policy briefs, guidelines, checklists & frameworks

Rare in Progress

Measure, benchmark & communicate the progress countries are making on the design, adoption & implementation of national rare disease policies & plans

Rare in All Fora

Leverage multilateral fora to elevate rare disease on the health & political agendas of governments and to foster regional, multilateral, and multistakeholder cooperation

Rare Partners

Connect policymakers with diverse experts from civil society, academia, industry & former governments from their own country & other countries

Accelerate & harmonize rare disease policy