Global Rare Disease
Policy Network
An evolution of the Asia-Pacific Economic Cooperation (APEC)
Rare Disease Network & the global steward of the
APEC Action Plan on Rare Diseases
Enabling a future where every country in the world has effective, patient-centered, and evidence-informed rare disease policy
Accelerate & harmonize
rare disease policy
Our mission is to accelerate & harmonize the design, adoption, and implementation of national rare disease policies & plans, with a focus on Asia Pacific & Latin America, by catalyzing political will & sustaining momentum, and facilitating exchange of best practices between & within countries.
Rare Toolbox
Create tools to help governments & partners make political & policy decisions for rare diseases
Rare in All Fora
Elevate rare disease on health & political agendas and foster cooperation through multilateral fora
Rare in Progress
Measure, benchmark & communicate progress of rare disease policy design, adoption & implementation
Rare Partners
Connect policymakers with diverse experts from civil society, academia, industry & other governments
Patient Centered.
Evidence Informed.
Health Minister Endorsed.
APEC Action Plan on Rare Diseases
In 2017, Health Ministers from the 21 economies of the Asia-Pacific Economic Cooperation (APEC) Forum established the APEC Rare Disease Network. This group of government policymakers, academic & clinical experts, patients & advocates, and industry leaders developed the APEC Action Plan on Rare Diseases, which all 21 APEC Health Ministers approved and endorsed in 2018.
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The APEC Action Plan on Rare Diseases contains more than 70 recommendations & 30 targets with measurable indicators across 10 pillars. It is informed by peer-reviewed evidence, best practices & real-world learnings from diverse stakeholders around the world. It is translated into Spanish, Chinese (Traditional), Portuguese, Japanese, and Thai. Over the past 5 years, governments have used the Action Plan to spark national planning efforts & guide policy change.
22
Countries
400+
Total
Members
200+
Government
Officials
140+
Academic & Clinical Experts
60+
Patient Advocates & PLWRD
